tag:blogger.com,1999:blog-89616032206016379972024-03-12T22:33:06.143-04:00My Journey with a Mast Cell Activation DisorderAnonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-8961603220601637997.post-11371256233340086132016-05-11T16:30:00.000-04:002016-05-11T16:30:23.298-04:00Two Months on Full Dose Gastrocom<div style="text-align: justify;">
I have now been on full dose gastrocom/cromolyn sodium for about two months and things are improving. :) It is very nice to stop the accelerated worsening I've had over the last several years.</div>
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The first thing I noticed was a lessening of the severity of my headaches. I still have a constant headache but it spends more time in the three range now instead of the four/five range of the last year. Next, my sense of smell improved. I noted this when I was surprised by the smell of ground black pepper. Apparently I hadn't smelled that in so long that I forgot that it had a smell. My spice cabinet apparently smells when I open it, too.</div>
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My gastrointestinal system then improved with less extremes and much less nausea. Additionally, for the majority of my life I had no appetite and was never satiated/full. I ate because I needed to do so but apart from crashing blood sugar levels was never self prompted to eat. The antihistamines I started over a year ago had given me a regular appetite which was an improvement but I still never felt full. Now with the gastrocom added I actually feel satiated as well. It is something of a foreign sensation but I'm excited to now eat when hungry and stop when full.</div>
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In the last few weeks I have also noted that my fragrance sensitivity might be improving. Normally, even with premedicating with additional medication (benadryl which is a rescue medication for me) and a face mask I feel worse for the remainder of the day and up to three additional days after being among lots of other people. I forgot to premedicate before church three weeks ago and did not feel worse for the remainder of the day. The next week I did premedicate and still did not feel worse after church. This last week I did not premedicate and did not feel worse after church. It would be a wonderful blessing for my fragrance sensitivity to continue to improve.</div>
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I have noted, however, that I am more reactive during the second half of my menstrual cycle and am back to getting fairly ill the first week of my cycle. I am also experiencing "an excessive inflammatory response to ovulation" for up to five days which started four months ago. I may have to go on medication to regulate that but have thus far responded poorly to artificial hormones.</div>
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In other news, I graduated from physical therapy for my core and am doing much better in regards to pelvic movement and recurring low back injuries. Next up is tackling my moderate to severe neck and upper back pain.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-88210640443855277212016-03-03T13:08:00.000-05:002016-03-03T13:08:59.787-05:00It's Been a Crazy Year!I can't believe that it has been a year since I last updated my blog. Many things have happened.<br />
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We packed up and moved at the beginning of May. I actually had more energy for about two weeks which was a huge blessing since we had to set up a new house. Shortly thereafter, my daughter was born by unplanned c section which really made a bad situation worse. Even though I've been told that you can't react to injected anesthesia, I spent the next 24 hours uncontrollably vomiting. I requested scopolamine early on and finallyrecrived it. Within about twenty minutes after application all the vomiting stopped.<br />
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I wear my mask and add another benadryl on top of my other antihistamines whenever I leave my house. I close up my house whenever my neighbors do laundry and take more antihistamines. The offgassing of at least one person's laundry gives me fairly significant cognitive changes within a few minutes. My headaches have dramatically increased in intensity which has always been my experience with routine use of antihistamines. My allergist said that essentially I had to pick the bad headaches or anaphylaxis. She then left the practice and moved out of state...<br />
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The c section further weakened my core strength. I repeatedly injured my back and experienced pain as I walked in my pelvis because my muscles couldn't keep the pelvis together. Fifteen years of chronic fatigue topped off with a c section is not a good combination.<br />
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I was a mess! With the support of my husband I saw my primary care doctor and left with what seemed like a zillion referrals and test requests. I'm still working through some of those. I started and am continuing physical therapy for my core. I'm happy to report that physical exertion no longer seems to knock me out for three days. I received a good report for my sinuses from the ENT but no help for the constant headache, pain and post nasal drip. All the autoimmune testing came back normal again but I'm supposed to see a rheumatologist.<br />
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My new allergist said that he thought I had a mast cell activation disorder unprompted on my first visit. He ordered lots of tests and I tested positive for Mast Cell Activation Syndrome. These are the tests that my last allergist said were a waste for me to have done. :) I'm now on gastrocom and worked up to full dose yesterday. There might be an improvement in my sinuses already.<br />
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I have never been so happy to have a new diagnosis. :) This one can actually replace many of my other ones.<br />
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Gastrocom is a mast cell stabilizer. It is not well absorbed so I am taking 200 mg (2 ampules) four times a day, 30 minutes before each meal and at bedtime. The stomach is to be empty. This drug can calm the mast cells all over the body so I am quite excited to see what this drug can do for me. I follow up with my allergist at the end of the month.<br />
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So, the last two months I've had the gumption to start over my medical care and this time things are improving. I have hope once again for a better tomorrow. The Lord told both my husband and I that this would be a better, different year for us and 2016 has started right off in that direction.<br />
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<br />Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-4377029428176724862015-03-03T17:05:00.001-05:002015-03-04T13:06:25.343-05:00Transparency: What were the last four weeks really like?<div style="text-align: justify;">
When you've been living with a chronic illness for essentially your whole life you get very skilled at hiding your illness even from those whom are close to you. Over the past several months and one of the main reasons I started this blog was because God told me it was no longer ok to hide my illness from others. So once again, I am opening up what it means to be me with every person who wants to know, and likely those who really don't want to know.</div>
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Let me share with you what the last several weeks have been like. There are have been many, many lows but by my being honest with myself and with others I have been abundantly blessed.</div>
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As I have shared things started to get rough about three to four weeks ago. All of my baseline symptoms dramatically increased and I became so sensitive that I started wearing a carbon filtering face make when out in public.I wish that I could say that the mask has solved all my problems but my baseline symptoms are all still significantly elevated.</div>
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Two weeks ago I was still just pushing through everything. I asked for specific prayer and many were faithful to pray for me. However, for three straight days I borrowed from the future heavily to maintain a clean house despite raising three small children, to not just care for my three children five and under but also homeschool them and then have dinner ready everyday when my husband got home. Normally all this is about all I can handle anyway but I am also having a flare of symptoms and am in my second trimester. After those three days, I was barely able to function for the next four. On day two of my recovery I cried and had a discussion with my husband about the fact that I could no longer do all these things. On day three I spent the ENTIRE day in bed and day four I spent most of the day in bed. I then had to have a very low key entire week to finish recovering. So, THREE days cost me the ELEVEN following days.</div>
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My husband and I agreed that my first priority was to care for and homeschool my children. Everything else would be secondary and only what I had the energy to address. In vulnerability I reached out to my small group and they have been wonderful. Not only have they believed that I am ill right now, but they are willing to address my expressed needs. It has been hard to welcome them into my mess but very rarely have I been blessed so abundantly.</div>
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Just to cement this all in, God in his mercy, gave me a cold that wiped me flat for two days. He reminded me that things could be so much worse and that He wants me to make good choices now so that I can build into my future. So much of the world's advice is to live today for all its worth with no concern for tomorrow and I simply can not live my life that way. Today I must choose right so that I can spend tomorrow with my family. When I choose poorly my whole family suffers.</div>
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The Lord has also further restored my hope for the future in that I now have an appointment with a doctor who treats people with a Mast Cell Activation Disorder on March 20th. I have been looking for such a doctor for more than two decades.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-61177163272029440882015-02-19T20:51:00.000-05:002015-02-19T20:51:01.887-05:00The Worldwide Debut of Me in a Mask<div style="text-align: justify;">
<span style="font-family: inherit;">I received my I Can Breathe Sport Mask yesterday. Since I am fragrance sensitive I hand washed the mask and exhale values with soap to which I am not sensitive. They air dried </span>overnight<span style="font-family: inherit;"> and were ready to go this morning. It was very simple to put the values into the carbon filter and then attach the carbon filter to the interior of the mask.</span></div>
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<span style="font-family: inherit;">I wore the mask to my moms group this morning and it went really well. My group of moms was very supportive and had even skipped things like showering and using perfumed items on my behalf. We do eat breakfast together so I couldn't wear the mask while eating or drinking; otherwise I wore it. Those at the group who didn't know me really just ignored the mask. I could tell that they maybe looked twice but that was it.</span></div>
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<span style="font-family: inherit;">The mask does make me breathe a little heavier since it takes a bit more work to pull air through the mask and carbon filter. I don't think it was noticeable to anyone else. The wonderful news is that the mask did diminish my reactions. I did have an asthma attack and maybe a few hives but both were minor and probably were caused by what I inhaled while eating and not wearing the mask.</span></div>
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<span style="font-family: inherit;">I'm not sure that I have shared what reactions I am currently experiencing when I go to a store or am in public. I'll list them here in no particular order:</span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Asthma attacks</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Hives</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">General itchiness</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Extreme fatigue</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Flushing</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Headaches </span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Nasal congestion and runny nose </span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Joint pain </span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Nearly passing out</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Swelling of tongue/lips/throat</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">Memory/language issues</span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;"><br /></span></span></div>
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<span style="background-color: white; color: #141823; line-height: 19.3199996948242px;"><span style="font-family: inherit;">I do not necessarily experience all of these symptoms when I go out. Something always happens and usually isn't singular. Symptoms generally escalate even if I immediately return home and can last a few days.</span></span></div>
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This all returned quite suddenly about two weeks ago. While my baseline symptoms had increased when I was about five weeks pregnant, my overall sensitivity to other people's personal care products and whatever is randomly in the air at stores was at the same time greatly diminished.</div>
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<span style="background-color: white;"><span style="color: #141823; font-family: inherit;"><span style="line-height: 19.3199996948242px;">A new symptom in the last week is an irrational feeling of being overwhelmed. Having never really </span></span><span style="color: #141823;"><span style="line-height: 19.3199996948242px;">experienced</span></span><span style="color: #141823; font-family: inherit;"><span style="line-height: 19.3199996948242px;"> this as a symptom before I'm a bit at a loss as to what is going on and have just been pushing through it. I am seeing an endocrinologist for the first time on Monday and will mention this to him.</span></span></span></div>
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<span style="background-color: white;"><span style="color: #141823; font-family: inherit;"><span style="line-height: 19.3199996948242px;">And here is what you have all been waiting for! A picture of me in a mask, looking quite tired and experiencing swollen top eyelids (they are common for me once again):</span></span></span></div>
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Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-41058948554555907492015-02-10T10:12:00.001-05:002015-02-10T14:09:36.594-05:00You might soon spot me wearing a mask<div style="text-align: justify;">
<span style="font-family: inherit;">Since I stopped the Quercetin between the eleventh and twelfth week of pregnancy things have continued to worsen. Right now I am about 24 weeks pregnant. Everything with the baby is going well and we currently have no concerns regarding development..</span></div>
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<span style="font-family: inherit;">I am having escalating reactions every time I leave my house again. I am experiencing severe headaches, sore throats, nasal swelling and itchiness. For the remainder of the day, I am exhausted and feel very overwhelmed. Currently, I am still on the max dose of Diclegis for morning sickness and it contains the Class A antihistamine <span style="color: #333333; line-height: 16.7999992370605px;">doxylamine succinate. The instructions state not to take any additional antihistamines while taking Diclegis so I am not sure what medication I can safely take when I leave my house. I have had to take Benadryl a few times.</span></span></div>
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<span style="color: #333333; line-height: 16.7999992370605px;"><span style="font-family: inherit;"><br /></span></span></div>
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<span style="font-family: inherit;"><span style="color: #333333;"><span style="line-height: 16.7999992370605px;">I did send my midwife an email but I do not really expect her to know what to do. Since I obviously don't want to hurt myself or the baby with </span></span><span style="color: #333333;"><span style="line-height: 16.7999992370605px;">medication</span></span><span style="color: #333333;"><span style="line-height: 16.7999992370605px;"> or </span><span style="line-height: 16.7999992370605px;">anaphylaxis</span><span style="line-height: 16.7999992370605px;">, I am looking at buying a high quality mask to wear when I leave my house. The two that I am most interested in are:</span></span></span></div>
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<span style="color: #333333; font-family: inherit;"><span style="line-height: 16.7999992370605px;"><a href="http://www.vogmask.com/">http://www.vogmask.com/</a></span></span></div>
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<span style="color: #333333; font-family: inherit;"><a href="http://icanbreathe.com/store/index.html">http://icanbreathe.com/store/index.html</a></span></div>
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<span style="font-family: inherit;">Does it shock you that enough people have environmental, fragrance and chemical sensitivities that numerous companies sell reusable masks with carbon filters? Are people like me the canaries in the coal mine and soon nearly all of us will be wearing masks because our air quality is so poor?</span></div>
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<span style="font-family: inherit;">I would like to add that I have zero conventional allergies and these reaction don't occur when I am outdoors away from people. Reactions above my baseline symptoms occur indoors or when I am with a group of other people who have put some sort of fragranced product on their bodies or clothes. I actually am unable to live in an apartment or a building with doors opening into a common area. I absolutely can not share laundry machines with another family. I have to wash clothes given to my family as many as ten times before the leftover fragrances stop making me ill. Some things I have to toss or give away.</span></div>
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<span style="font-family: inherit;">This illness is an isolating one and my natural tendencies are toward withdrawal There are some specific ways that you can pray for me regarding this:</span></div>
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1. Pray that I would have discernment to know when I can handle exposure and when it would be too much. Pray that fear and the desire to withdraw would not play into my decisions.</div>
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2. Pray that I would have the courage to wear a mask even though others will likely react negatively to it.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-40445647364220764812015-01-04T13:09:00.001-05:002015-02-10T09:38:03.569-05:00What was Quercetin Doing for Me?I have joyful news. I am currently pregnant and expecting our fourth child. As with my first child, many of my major symptoms of MCAD were greatly diminished once my severe nausea began. I did not improve with my second or third child so this is a very unexpected blessing. I have been able to stop taking all of the Claritin, Ranitidine and Benadryl that I had started in the last few months as my MCAD entered "body freak out mode." <br />
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At first I stayed on the 2400 mg of quercetin that I started six plus months ago However, since the effects of quercetin on a developing baby are unknown, I stopped taking the quercetin after breakfast on November 16th between the eleventh and twelfth week of pregnancy. My midwife could not find a lot of information on pregnancy and quercetin so I made the decision to stop. So what happened? I tracked above current baseline symptoms for a few days to see what impact this would have on my body. Previously when I had stopped quercetin for 24+ hours, I had increased problems with word recall while speaking, increased spelling issues and had a hard time remembering people's names. During those times, however, I was not pregnant so I may not have those symptoms reappear at this time.</div>
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<u>November 16</u></div>
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8:30 am: took 800 mg quercetin</div>
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12:30 pm: did not take quercetin with lunch</div>
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6:00 pm: Itchiness (eyebrows and legs). Did not take quercetin with dinner</div>
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9:00 pm: Restless.</div>
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<u>November 17</u></div>
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9 am: Inexplicably tired. I slept the normal amount of time last night and do not have any sort of communicable illness.</div>
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12:30 pm: Restless and itchy still.</div>
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1:30 pm: Took a nap and am still very tired.</div>
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9:30 pm: Some word stumbles. Had to concentrate on the words.</div>
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<u>November 18</u></div>
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Itchy.</div>
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Back pain. I do have an old back injury but why is it flaring now?</div>
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Short term memory decreasing.</div>
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Just felt sick.</div>
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Worsening rash on face.</div>
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<u>November 19</u></div>
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Sense of smell significantly diminished, perhaps by 50%.</div>
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Itchy with some hives at the end of the day.</div>
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Rash still there on face.</div>
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<u>November 20</u></div>
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Awful headache (could be due to less sleep than normal)</div>
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Still itchy.</div>
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Sense of smell still significantly reduced. No signs of a virus, etc. </div>
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Digestive track distress</div>
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Bad day.</div>
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<u>November 21</u></div>
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Still reduced smell</div>
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Digestive track distress</div>
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<u>November 22</u></div>
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Fatigue.</div>
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Still reduced smell.</div>
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Bad headache (could just be the weather change)</div>
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Rash on face so bad I put steroids on it (not supposed to do this!)</div>
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<u>November 23</u></div>
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Fatigue</div>
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Still Reduced Smell</div>
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Rash on face still present<br />
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Now it is January 4th, 2015. I am now over 18 weeks pregnant. The severe headaches, and decreased smells have continued. My baseline continuous headache is now always at least a four and often a six. I have increased my medicated sinus wash to twice a day which has not yet seemed to help. The bleeding in my sinuses which started several weeks ago, though, is responding to the increased steroid. <br />
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The memory and word recall issues have continued. This is not surprising since I noticed that the brain related stuff were the first symptoms which improved. The rash on my face greatly improved with the steroid cream and now I can keep it relatively controlled by putting coconut oil on it at least twice a day. My hands are definitively more reactive now so I have to put lotion on them every time I wash my hands.<br />
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I think it is safe to say that Quercetin was doing quite a bit for me. I plan to take it again as soon as possible, but it is not recommended to take while breastfeeding. I do plan to breastfeed my fourth child so will have to at least wait until my little one is mostly on solids before starting this again.<br />
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I hope that everyone had a wonderful Holiday season and wish you all a Happy New Year!</div>
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Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-18476696734472203552014-08-22T19:34:00.001-04:002014-08-22T19:34:19.093-04:00Gluten Free Pizza Crust<h2 style="text-align: justify;">
Gluten Free Pizza Crust</h2>
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<a href="http://3.bp.blogspot.com/-0RQMhH_9AgM/U_fP5NQOdcI/AAAAAAAAANE/Ko4iUF1XdKk/s1600/Pizza.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-0RQMhH_9AgM/U_fP5NQOdcI/AAAAAAAAANE/Ko4iUF1XdKk/s1600/Pizza.jpg" height="213" width="320" /></a></div>
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After being disappointed by gluten free pizza crusts, I created my own pizza crust and am quite pleased with it. This crust stays together, doesn't crack and has a very mild taste.</div>
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<u>Ingredients</u></div>
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2 t yeast (or use one packet which is just a bit more)</div>
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1/2 c water, warm enough to proof yeast</div>
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1 t sugar</div>
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1 egg</div>
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2 1/2 c oats</div>
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1/2 t salt</div>
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1 T olive oil</div>
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1 t minced garlic</div>
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<u>Directions</u></div>
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Preheat oven to 450 degrees F. Whisk together the water, yeast and sugar in a small bowl. Set aside for about five minutes. </div>
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Meanwhile, use a blender, food processor or grain mill to grind the oats to a flour. Set aside about 1/4 c of the flour and place the remaining into a large bowl. Add the salt to the flour and mix. Next, add the yeast mixture, oil, garlic and egg. Mix until a ball forms and all the flour has been incorporated.</div>
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Dust a rolling surface with the oat flour that you set aside. Roll the dough out in a pizza shape. Place the crust onto a nonstick pizza pan, pizza stone or another pain coated with oil. Bake the crust for about ten minutes. </div>
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Remove the crust from the oven. Add your desired toppings and then return the pizza to the oven. Bake for an additional 8 - 10 minutes or until the cheese is melted and the crust edges have browned.</div>
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We generally double this recipe and make two pizzas.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-1943235224823264382014-07-31T13:53:00.000-04:002014-08-22T20:06:49.711-04:00What is it like to have a Chronic Illness?<div style="text-align: justify;">
Having a chronic illness, visible or invisible, impacts the everyday life. While chronic illnesses vary I do think that they have all one common denominator: lack of energy. Every person has suffered some type of illness at some point. We all know that when you have an infection or a virus, your body works overtime and as a result you are less energetic. You call in sick to work, you sleep longer, you take some medication and hopefully feel better in several days to several weeks. Now, hang on to that tired sensation and stretch it over two months, two years, two decades.... What would that mean for your life?</div>
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Let's see if I can break this down a bit further for you. Let's say that the normal person has 100 energy dollars (ED) to spend each day. By the time you get home from work, you have spent 60 ED. That leaves you with 40 ED to do with as you would like that night. You make your dinner (5 ED - lots of chopping!), you do some laundry (20 ED), take out the trash (1 ED). Other nights you might go out to dinner with friends (30 ED). You go to bed each night and apart from minor illnesses wake up with 100 ED to spend the next day. Minor illnesses take varying amounts of ED, but you have sick days so you can call in sick when work would be too much.</div>
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All those crazy symptoms that the body of a chronically ill person's puts out are often bad enough. However, those same symptoms also consume ED. The body needs energy to put those symptoms out or to compensate for a deficiency in the system. Medications to control symptoms often also consume ED. So some medications are worth the energy cost and some are not.</div>
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Depending on the severity of my chronic illness I can honestly say that I have had as little as 30 ED to spend on a day. When I was working full time, I generally had about 65 ED to spend on a day. My family needed my income so that meant that I worked and really did nothing else. Some days at work took more energy than I had. It times of fair health I could then borrow from the next day and just hope to make it to the weekend. Eventually I borrowed too heavily to meet the needs of the current day or habitually borrowed over a long period of time. Weekends would then become inadequate to make up that deficiency. I would then use my vacation time to simply stay home and rest. Nearly all of my sick days were used simply on the most extreme manifestations of my chronic disease. Medical leave became necessary several times.</div>
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Additionally, I had a reoccurring commitment on Thursday nights after work. In order to attend that event every single week, I had to get permission from my boss to work a later shift on Friday. Sometimes I simply could not borrow ED from Friday and would have to miss the Thursday event even with this compensation.</div>
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For all of you saying that clearly I was a poor employee, ask my employers. I was still routinely promoted, recognized for excellence of work routinely and at review time, and doubled my salary in six years at the same company. I spent all my ED for the day at work and my family had to take care of the other things that needed doing at home. Sometimes I had some ED to help out, but those were definitely exceptions.</div>
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But, I was not lazy. I was not taking advantage of someone else. I simply had nothing left to give that would not jeopardize the income needed by my family.</div>
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I no longer work outside of the home but instead stay home with my children. What does that mean for my day? Certainly I have much more control over my daily activities but do spend much of my ED on caring for my sweet blessings. On the fair days, we are busy in the mornings and more sedate in the afternoons. On poor days I orchestrate instead of participate.</div>
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The guilt, though, and the longing for a normal amount of ED!</div>
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I do hope that this glimpse into my life has blessed you in some way.</div>
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Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-28287428565222337492014-07-14T14:34:00.001-04:002014-07-14T14:34:11.883-04:00Low Histamine Italian Pork Tenderloin<div style="text-align: justify;">
Here is a recipe that our family has enjoyed that is easy to make, tastes wonderful and is also low histamine.</div>
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Italian Pork Tenderloin</h3>
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By the time that I thought to share this recipe with you, this was all that was left of two lbs of pork tenderloin. Everyone in the house loves this.</div>
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<u>Ingredients</u></div>
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2 T Italian Seasoning</div>
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1 t garlic powder</div>
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1 t onion powder</div>
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1 t salt</div>
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1 t black pepper</div>
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~ 2 T Olive oil</div>
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2 lb pork tenderloin</div>
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Preheat oven to 400 degrees F. Mix the first five ingredients in a small bowl. Coat the tenderloin in the olive oil. I do this by pouring the olive oil in my baking dish and then rolling the tenderloin in it. This also then coats your baking dish to prevent sticking. Next, rub the seasoning mix all over the oiled pork tenderloin. Roast the pork tenderloin until a meat thermometer inserted in the center of the tenderloin reads 160 degrees F. Let stand for about ten minutes before slicing. </div>
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This serves eight 3 oz. portions.</div>
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If you are sensitive to any of the seasonings, sub them with other ones.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-49411326413307724952014-07-12T23:13:00.004-04:002014-07-13T16:07:54.907-04:00What I learned during our two week trip<div style="text-align: justify;">
1. It was a very good idea to pre-medicate myself starting two weeks before we left. I generally only use antihistamines when above my baseline symptoms. I knew, however, that I would have minimal control and diet options while not in my own home and that nearly everyone else uses fabric softener. So, I started on a 24 hour antihistamine that has worked well for me in the past (Claritin). I already knew it worked well for me, especially a doubled dose supplemented with Benadryl that I could move to if necessary.</div>
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2. I prepared ahead of time for the need to increase my medication. I packed lots of medication and supplemented immediately upon escalation of my symptoms. I always had extra medication in my purse which was with me at all times. I started with the quick acting medications (my inhaler with any lung involvement and Benadryl for everything else) and actually did not need to move to a double Claritin dose.</div>
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3. I went on this trip with the understanding that I would be unable to control my diet and hence made wise decisions when I could do so (say a salad instead of a sandwich) but did not stress or go without eating. If you have significant food reactions, this might not be good advice for you. I seem to be much more sensitive to the environment and things that I inhale instead of food that I ingest.</div>
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4. Since my weight is often the first indication that my body is stressed I did pay attention to that. After just three days away I had lost several pounds, completely lost my appetite and people commented that I didn't look well (too thin). I then intentionally ate more food and ate until the physical sensation of FULL instead of the normal loss of appetite when satiated. I really dislike eating this way but needed to do so to give my body the nutrients to keep functioning. I did enjoy eating the higher calorie foods but also went for nutrient dense items.</div>
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Some of the weight gain I experienced was inflammation weight. That started to diminish when I was in a more suitable environment and has continued while I have been home. So, I've lost at least four of those pounds the last four days. I will continue to monitor the weight loss to make sure that once the inflammation weight is gone I am still at a healthy weight.</div>
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5. Prepare for a rebound effect upon reaching home. The first full day home had me almost in the ER. The rash on my hands dramatically worsened overnight and itched like never before. It was miserable. If extra antihistamines and topical steroid treatments had not worked I'd have gone to the ER for itching. I have never contemplated immediate care for itching before in my life. This was at least a seven on the itchy scale. Baseline itchiness for me stays around a three.</div>
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I took a picture after the rash and itching had calmed down that day. I could barely function let alone think to take a picture when it was awful.</div>
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<a href="http://1.bp.blogspot.com/-HDrfHD0_e4I/U8HmbtYFTzI/AAAAAAAAAFE/iB4qJGbZR1I/s1600/100512+103.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-HDrfHD0_e4I/U8HmbtYFTzI/AAAAAAAAAFE/iB4qJGbZR1I/s1600/100512+103.jpg" height="213" width="320" /></a></div>
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This really took my by surprise but the more I think about it the more a flare in a safe place makes sense. I wonder if the constant go and craziness of two weeks of travel from place to place had more adrenaline present in my body? Could the sudden loss of that cause something like this? Or could it just be that my mindset of keeping things cool while travelling prevented a significant flare until that mindset was no longer needed? I'd love to hear your thoughts on this.</div>
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Now that we are home again, we hope to move to a high nutrient diet that is also wheat free for the time being. I hope to be able to spend more time researching MCAD as well so that I can continue to share about that with you all.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-71625796939343464232014-06-24T15:32:00.000-04:002014-06-24T15:59:06.381-04:00Why didn't you know?<div style="text-align: justify;">
Now that I have begun to talk to people about my mostly invisible illness, a frequent comment has been "I had no idea!" Some knew that I was frequently ill but were unaware of the <a href="http://mymastcells.blogspot.com/p/about-me.html" target="_blank">full extent of my illness</a>. In reality, only two people in my life know the extent of my struggles on a daily basis and even they only know what I have been able to express and they have been able to observe.</div>
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I think that there are two distinct reasons for my silence up to this point. One is external and one is internal.</div>
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The external factor is entirely associated with the spoken and unspoken word of others. I found out quite quickly that when someone asks how you are, they really don't want to hear anything but good, great, or well. If you ever say that you are not well, doing poorly, etc, you will at best receive a blank stare and an "I'm sorry to hear that" before the conversation is entirely over. Do I really need to list the other comments I've gotten? What would you say in response?</div>
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To avoid this whole scenario when asked how I am I say: "Fine," "Alright" or "Ok." I can not bring myself to lie and say well, good or great. The surface question is then answered and the conversation has the potential to move on, if I can talk around the big issue in my life. I can't always do that.</div>
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I would love to say that the majority of the comments have been from those in the acquaintance group. That, however, is very far from the truth. I and others have been most wounded by those firmly in the friend category. I have had very few positive responses when I have shared the depth of my invisible illness. I do understand that if you have never been significantly ill you can not empathize, however, you can sympathize. Just acknowledging the severity of the illness goes a very long way. Immediately changing the subject, questioning the honesty/mental health of the individual, or encouraging the person to be more positive is never helpful. If you do acknowledge the illness and offer to help, please follow through. May you occasionally have someone take advantage of you? Perhaps. Much more frequently you will be able to quite easily bless another person.</div>
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If you think that someone is not truthful about their condition, wallowing in self pity or taking advantage of someone else, PLEASE pray about it before talking to that person. I have had this conversation with others several times, and only ONCE was the person spot on. She spoke wisdom into my life and the Lord blessed it. I have felt betrayed and devastated every other time.</div>
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Never encourage someone to not believe their spouse unless you have excellent evidence of untruthfulness. What could be more devastating to a chronically ill person than a spouse who no longer believes them?</div>
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Just as we have been told since we were children, the outward appearance is not reflective of the condition of the interior. I have often longed to look as sick as I feel. It has not happened often but I can honestly tell you that when I look as bad as I feel others are very supportive up until I look better again.</div>
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I think that there are VERY few hypochondriacs in this world. Be careful whom you label that way. Maybe something is always wrong because something IS always wrong.</div>
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I am not sharing my story to shame anyone but rather to provide a glimpse of how my invisible illness has impacted my life because I am confident that you know someone with an invisible illness. Why not sit down with them and have a frank, open discussion. Believe what they say and act upon it.</div>
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<br />
<span style="text-align: justify;">The other reason that I have been silent is entirely my fault. I am very much a pick yourself up and carry on type of person. The constant push to keep going has in many ways even hid this illness from myself. I do what I need to do to make it through the day. I have done that for just about twenty continuous years without really take a reflective look at the emotional and spiritual aspects of being chronically ill. Dreams have crashed and burned and I've never stuck around long enough to witness the fire. I am starting to be prompted to change that. Being open and honest with myself necessitates sharing with you.</span><br />
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<span style="text-align: justify;">I am working on the internal reason for my silence. Will you work on the external? </span>Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-89697923892205676072014-06-16T14:39:00.002-04:002014-06-16T14:39:45.416-04:00How are things with the trigger gone? (post one week)<div style="text-align: justify;">
I have definitely improved since my husband stopped using that hair product but have not yet returned completely to baseline. I was using my inhaler at least twice a day before but am still using it as often as once a day. My energy level is almost back to normal but I am still easily overwhelmed. I still am having to "borrow" energy from the next day to do something today. Before I had nothing to borrow. Yesterday I demonstrated that I am currently still quite sun sensitive as I burned after 4 pm. Generally when in normal health for me, I can enjoy the sun before 10 am and after 3 pm. I am having random severe itchy periods that are responding thus far to a single dose of Benadryl.</div>
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During this time I have also returned to eating a fairly normal standard american diet. Since I was still able to consume traditional oatmeal, baking powder and other lightly gluten containing food I did try wheat again. it turns out that I can tolerate a single serving of wheat but consuming more than one serving causes GI and skin reactions. Thus, I am limiting my gluten consumption and mostly eating gluten free meals. When we are traveling this summer, I will not need to strictly limit my gluten consumption as long as my symptoms remain mild.</div>
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I am consuming high histamine food thus far (mostly berries as they are in season right now) and am not seeming to react to them. I am VERY hopeful that I'll be able to try to treat my illness with a high nutrient diet in the near future. :)</div>
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I did add Claritin to my daily medications so some of my health improvement could be related to that antihistamine. As mentioned, I am also taking Benadryl as needed for significant itchiness not covered by the Claritin. Thus far those medications have not seemed to impact my nursing relationship with my son. I wanted to make sure that I would be able to pre-treat myself with those medications to help with our upcoming traveling. I really do not want to end up in the ER due to random exposures to perfumes, scents and personal products while we are not home.</div>
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Thank you all for your prayers and support!</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-40025995555289839292014-06-09T20:45:00.001-04:002014-06-09T20:47:03.645-04:00A potential answer?<div style="text-align: justify;">
On Monday, May 12th, I started my third week on the low histamine diet recommended and modified by the <a href="http://www.mastocytosis.ca/masto.htm" target="_blank">Mastocytosis Society Canada</a>. Also on that day, my husband received a new leave in hair product that you apply after shampooing and conditioning and started it immediately.</div>
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<a href="http://mymastcells.blogspot.com/2014/05/low-histamine-week-three.html" target="_blank">Week three </a>was not that great. I reacted seemingly randomly and also could not add any additional food into my diet. This was a disappointment because of the improvements I experienced on week one and week two.</div>
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Two days after my week three summary, <a href="http://mymastcells.blogspot.com/2014/05/the-best-laid-plans.html" target="_blank">I posted</a> that I was experiencing more intense episodes instead of a some what steadily increasing worsening of my symptoms. I almost experienced my first (?) anaphalaxis episode just by going to a store. My overall health was dramatically worsening and I became easily overwhelmed and fatigued. Nothing went well in <a href="http://mymastcells.blogspot.com/2014/05/low-histamine-week-four-incredibly.html" target="_blank">week four</a> and my husband and I began to frantically look for a cause. <a href="http://mymastcells.blogspot.com/2014/05/and-doctor-said.html" target="_blank">Seeing my doctor</a> on Friday only got me a referral to an allergist and the reluctant acknowledgement that it did sound like I had a mast cell activation disorder.</div>
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Thus week five did not start off well. After an 18th month absence my asthma came back. The next day I saw the allergist and<a href="http://mymastcells.blogspot.com/2014/05/my-allergist-appointment.html" target="_blank"> that appointment</a> was basically a waste of time. I again tested negative to environmental allergies and wheat. My lung function at the appointment was above normal and my hives were not currently present. I was told to come back if I got worse. By the time I got home from the appointment, I was worse. After <a href="http://mymastcells.blogspot.com/2014/06/low-histamine-week-five.html" target="_blank">week five</a>, we decided to restart the low histamine diet to see if taking out the added foods would improve my health.</div>
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After <a href="http://mymastcells.blogspot.com/2014/06/midweek-update-yet-another-change-of.html" target="_blank">four days</a> back on the basic diet, I was still worsening and not having enough energy to do the diet and care for my children. So, I went back to my normal foods with the exception of gluten. I did start having minor rash after one meal but that was it. Heartburn and nausea have thus far stayed away.</div>
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Then one day I felt better in regards to energy and my ability to focus - my asthma was still hanging around. All my husband had to do was walk in the house to know that things were much better. He then commented that he had not used that new leave in hair treatment the night before. He stopped using it and I had several good days up until yesterday. We had talked about the fact that maybe he could use that product before leaving the house. Unbeknownst to me he used it yesterday morning and I felt worse. He then used it again today and I had a pretty bad day. I told my husband this via e-mail and he let me know that he had in fact used the product in the morning for the last two days.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
So, that product is trash. It has a related shampoo and conditioner that we are not sure about. If my asthma continues then we will likely get rid of the whole set.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
It is crazy, but not unusual in the MCAD community, to have something as simple as the use of a hair product have devastating consequences. While we don't know how long the effects of this reaction will last, we are incredibly thankful that I am no longer worsening and had improvement immediately upon stopping use of the product.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
This means, of course, that a low histamine diet might potentially still be beneficial to me. We have some traveling coming up and once we are back home we might pursue a low histamine diet transitioning to a high nutrient diet once again. For the time being, we are just focusing on going gluten free.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-71786026919695538992014-06-04T15:31:00.000-04:002014-06-04T15:32:29.323-04:00Midweek Update - Yet another change of plans<div style="text-align: justify;">
My husband and I are both very frustrated. I've done nothing but get worse over the last approximately four weeks. If food is a really big factor for me, why am I not significantly improving now that I have not eaten anything off the diet for four days?</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
On 04/28/14 I listed my symptoms before starting my low histamine experiment:</div>
<blockquote class="tr_bq" style="text-align: justify;">
<span style="background-color: white; color: #333333; font-family: 'Helvetica Neue Light', HelveticaNeue-Light, 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 19.600000381469727px;">For as long as I can remember I have had eczema on my hands. The itchiness and pain would be so severe that I would sleep with ice bags on my hands so that they would be numb enough that I could sleep. Topical steroids would help for a time but I would end with a worse flare up. Eventually I found a hand cream that helped and faithfully put a thick layer of that on every night and covered my hands with socks or gloves. At bad times I'd put more lotion on more frequently. I also found that red dyes and benzoates (a common food preservative) would make the eczema much worse so I avoid them.</span><br />
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<br /></div>
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I have been smell sensitive for as long as I can remember - natural and artificial scents make me ill ranging from headache to rash, joint pain, asthma attacks and nearly passing out.</div>
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<br /></div>
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I have had fibromyalgia for as long as I can remember. Medications do not help and severity comes and goes but is always present.<br />
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<br /></div>
<div style="margin: 0px; outline: none; padding: 0px;">
When I turned ten, I started having asthma attacks. This led to allergy testing. I reacted extremely strongly to the histamine control and then either tested positive for every single test or negative for every single one. Inconsistent results meant that I couldn't do allergy shots and was determined to not have allergies. My asthma comes and goes and I have excellent lung capacity for an asthmatic. I'll be attack free several years and then suddenly have to go on numerous drugs to get things under control. Eventually I discontinue all but one drug (Singular) and have no asthma attacks.</div>
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<br /></div>
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By the time I was 12, I had severe sinus headaches and completely lost my sense of smell. At 13 I had my first sinus surgery to remove nasal polyps and another when I was 14 to finish the first surgery. My sense of smell did not return. I immediately begin to make polyps post surgery. I had the next surgery when I was 20 and the fourth when I was 30. I then started a medicated nasal wash and now my sinuses look "great" and I can generally smell. My sinuses feel awful. I have continuous headaches, pressure and post nasal drip.</div>
</div>
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<br /></div>
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Eleven years of chronic fatigue started when I was 20 and lasted until I was 31. The fatigue was so severe at times that I had to drop out of school for a semester or take a medical leave of absence from work. In between the very bad times, I would still be continuously exhausted. Physical exertion of any type would cause me to feel as if I was dying and I would have a very hard time getting out of bed for as many as three days afterward. Medications did not help and my blood work was normal. I eventually determined that I could not share laundry facilities or use fabric softener. I discontinued that and my chronic fatigue was 100% gone immediately. I do experience unusual fatigue during "body freak out" episodes.</div>
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<br /></div>
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When I was 29 I started having significant memory issues. While documented, no cause has been found.</div>
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<br /></div>
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When I was 31, I started having regular bouts of acid reflux/heartburn lasting as long as eight months at a time. When I was 33, I started having bouts of nausea lasting as long at six months at a time. Diarrhea and constipation come and go.</div>
<div style="background-color: white; color: #333333; font-family: 'Helvetica Neue Light', HelveticaNeue-Light, 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 19.600000381469727px; margin: 0px; outline: none; padding: 0px;">
<br /></div>
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I am occasionally dermatographic. I periodically have hives lasting as long as six months.</div>
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<br /></div>
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I am generally an itchy person.<br />
<br />
My eye lids randomly swell and turn red.</div>
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<br /></div>
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I have been sun sensitive most of my adult life, burning in as little as five minutes of sun exposure. I can even burn outside of the hours of 10 am to 2 pm.<br />
<br />
I am fairly ill for approximately one half of my menstrual cycle each month. Birth control pills make it worse.</div>
</blockquote>
<div style="text-align: justify;">
Except for the eczema on my hands, nothing is different. My illness is moving from chronic to acute again. </div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
At this point, my husband and I are ready to concede that the low histamine diet is not working. It is taking a ton of energy for me to maintain it and my energy is again in limited supply. I'd rather spend that energy on my kids than on food preparation.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
If nothing else the low histamine experiment has seemed to indicate that I am currently gluten intolerant. I ate barley last night and have had heartburn and worsening eczema since that time. This means that I have more than a wheat issue currently. It is time to go truly gluten free. Maybe the rash, heartburn and nausea will go away on a completely gluten free diet and I can cross those things of my symptoms list.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
A low salicylate diet is a future possibility but not before this weekend. My husband and I will talk about it and figure out the new plan.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com1tag:blogger.com,1999:blog-8961603220601637997.post-38466250984163305992014-06-02T10:14:00.003-04:002014-06-09T20:29:03.075-04:00Low Histamine Week Five<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">What
should I say about my fifth week on the low histamine diet? On Day 30, I started having asthma related
symptoms and daily worsening health. Joint
pain, muscle pain, more hives, asthma attacks, bad headaches, sinus issues,
woozy/pass out feelings, heartburn, etc.
After my very <a href="http://mymastcells.blogspot.com/2014/05/my-allergist-appointment.html" target="_blank">disappointing allergist appointment</a>, I had some high histamine
foods for a few days. Nothing seemed to
worsen except for the heartburn and the eczema rash started back on my hands. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">My
husband and I came up with <a href="http://mymastcells.blogspot.com/2014/05/the-plan.html" target="_blank">The Plan</a>. On Sunday I started a modified low histamine diet in hopes that I could return my health to the slight improvement I had over the first two weeks which would be a massive improvement from where I am now. I will be leaving out the following low histamine foods because I seem to have reacted to them during my first try:</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">wheat</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">sunflower seeds</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">ice cream</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">coconut</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">I inadvertently ate spinach (high histamine) regularly starting at the beginning of the worsening of my health so I do not plan to try spinach again for awhile. I am very hopeful that spinach caused my increasingly debilitating symptoms but it is likely to just be wishful thinking on my part. I am leaving potatoes in at this point since they will help me to maintain my weight and also are very useful in gluten free baking. If things are still bad, we will consider taking the potatoes out before considering the low histamine diet a complete failure.</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">So, week five was worse than week four. I am almost to the point of needing to be on continuous antihistamines and adding asthma controlling inhalers. My pain level is definitely up to at least a four each day with regular flares to five or six. I hope to have a wonderful update a week from today.</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">Week Five details will be on <a href="http://mymastcells.blogspot.com/p/my-low-histamine-experiment.html" target="_blank">My Low Histamine Experiment</a> page.</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: Times, Times New Roman, serif;">P.S. Benadryl (dye free, of course) is amazing. I will definitely be keeping that on hand for future needs. I got a rash all over my hands and arms from weeding the flower bed - I actually didn't get it all done because the rash happened rather quickly. I took a Benadryl at my husband's insistence and the rash was gone within about twenty minutes. Wow! Now I know why Benadryl is such a big hit in the MCAD community.</span></div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-60857624055535342842014-05-30T21:17:00.000-04:002014-05-31T10:18:22.031-04:00The PlanI have a wonderful husband. Once he got home we talked about this all and came up with a plan.<br />
<br />
As I started looking at a low salicylate diet I compared it to the low histamine diet that I had been following and discovered that spinach is not technically allowed. I started consuming it at the end of low histamine week two and ate it regularly after that point. If you recall, week three was rough and week four was awful. Since we have no idea why things went south so fast, it is possible that spinach was the culprit. Wouldn't it be lovely to know?<br />
<br />
The biggest question we want to answer is if we can return to the improvement I had during the first two weeks of the low histamine diet. Back then hives were not occurring, I could leave my house and I was not having asthma attacks. That first week wheat and ice cream seemed to make me sick so I will start the diet out leaving out those two low histamine items. Sunflower seeds will also stay out because they gave me hives.<br />
<br />
I have allowed high histamine food in over the last 24 hours and maybe felt a bit worse (now that I feel pretty bad all the time I can't really tell if that food made things worse). I ate a piece of homemade bread just a little while ago, however, and the rash started to come back right away on my hands. Yeast, therefore, might be a significant issue for me. Yeast produces a lot of histamine as it grows but it is also possible that I am just sensitive to yeast. In the past I have struggled with yeast overgrowth in many ways.<br />
<br />
If I do well back on the base low histamine diet, we will start pursuing a transition to a high nutrient diet at a much more cautious rate. I'll borrow from the advice for introducing new food to babies (a new food every three days). I am hopeful that I will be able to tell if anything is different quickly but will still wait the full three days before trying another food.<br />
<br />
If returning to the base low histamine diet does not diminish these new symptoms, we'll likely forgo a diet change at this point and pursue traditional medical care...maybe with new medical providers. Once I am under control again we'll look to implementing a high nutrient diet or trying a low histamine and low salicylate diet hybrid. If I do respond well to the removal of high salicylate foods aspirin desensitization will likely be very beneficial to me in the future.Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-57764822062567724202014-05-30T10:53:00.003-04:002014-05-30T10:57:09.163-04:00Now What?<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Yesterday I was very demoralized. I had spent a lot of time, money and energy
pursuing the low histamine diet. I felt
better during the first two weeks and then things got dramatically worse. I had very high hopes that an “academic”
allergist really on top of current medical research would be at least
sympathetic to what was going on. I
guess that I wasn't sick enough yet.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
So, I had pizza last night to see what would
happen. That included wheat which I
reacted to in week one, tomatoes which I reacted to in week three, and foods
that I hadn't had in almost five weeks: cheese, yeast, olives, pepperoni and
sausage. Essentially everything in pizza
is high histamine</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Nothing worsened.
I used my inhaler that night, I was still itchy from earlier in the day,
my right eye was unhappy and I had heartburn that night. Sound familiar?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
It is possible that for whatever reason by mast
cells are freaking out so that I can no longer distinguish individual
reactions. My “bucket” seems to be back
to overflowing even on a low histamine diet.
Therefore, of what benefit to me is a low histamine diet?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
I have started to look into high salicylate food
and I know that I was eating way more than usual. Peanuts, honey, kiwi, apples and cucumber are
all supposedly high salicylate. As are green
pepper, mushrooms, zucchini, coconut, ground pepper and other spices. I was likely eating at least five servings of
those a day and my vitamins are made from fruits and vegetables. Did I then empty my histamine bucket to start
an ongoing allergic reaction to naturally occurring salicylates?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
It seems that some of the high histamine foods are
also high salicylate and I inadvertently chose those to try: tomatoes, green
beans and grapes. Berries and things
like oranges might never be a good choice for me since they also seem to fall
into the double high category.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Since I essentially have no medical support right
now I am left with a few choices:</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Pay out of pocket to see another medical
professional</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Get really pushy with my PCP or the allergist to get diagnosed</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Try a low salicylate diet to see if that is what
derailed my low histamine diet</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Try a low histamine, low salicylate diet hybrid</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
I am not sure which way to go. </div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
If I were to go on a low histamine, low salicylate diet
could I still maintain proper nutrition on my own? Would I still be able to nurse my ten month
old?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
If I were to be super pushy with my doctors and get
diagnosed, would my insurance be forced to pay for me to go to a mast cell
activation disorder specialist?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
If I were to go back on my traditional diet would I
trade the current hives and asthma for the old eczema and heartburn? Or since I was already having warning signs
of a body freak out will it happen no matter what I do?</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com1tag:blogger.com,1999:blog-8961603220601637997.post-15709802843740920142014-05-29T14:07:00.000-04:002014-05-29T15:06:50.878-04:00My Allergist Appointment<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
My appointment ended up being a traditional allergy
appointment. I started off with the
nurse who took my vitals and gave me a breathing test that is for
asthmatics. I did have to use my inhaler
three times yesterday after not using it for over eighteen months but woke up
fine today. I scored very well at 111%
which is normal for me. Allergists
always comment on how great my lung capacity is for an asthmatic. </div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Since I had antihistamines recently and had also
take Quercetin, they then checked to see if I would react to a histamine control
skin test. The nurse applied it, turned
to put the spent test away, turned back and said that I was for sure reacting. So, within about 5 seconds it was positive.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
The doctor came in and we talked about what had
been going on. I got one of my least
favorite doctor questions after I had already answered it: “Why are you here?”</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Really?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
We just talked about how I got hives from walking
into a store, which progressed to mouth and tongue issues and then a resurgence
of my asthma yesterday. That this has
happened to me before and I was entering a “Body Freak Out Mode.” That for the past two months things have
gotten crazy. So I essentially say that
I don’t want to get really sick again.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
The doctor is not interested in my low histamine
diet experience. She says that food is
never the cause of chronic hives. She
isn't super interested that the last time ended after I stopped sharing laundry
machines because chronic hives isn't caused by laundry detergent.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
In fact chronic hives have no known cause…</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
So, at this point she doesn't want to add any
medications. If I were to worsen, Claritin and Zyrtec are
both ok for nursing. I’d first do Claritin
once a day. Breakthrough hives on that
means Claritin twice a day. Break
through hives on that add a Zantac (it was hard to get a word in else I would
have asked why Zantac would be good for hives, did she mean Zyrtec?). She said that there would be options to layer
the various antihistamines. Xolair was
also mentioned as good for chronic hives.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
When I am not nursing and am done having children I
should pursue aspirin desensitization.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
I managed to get a word in and asked if she had
heard of Mast Cell Activation Disorders.
She said that she had but you just treat the symptoms. She did admit that it was likely that I had
MCAD.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
The doctor also scratched both of my arms and said
that I am slightly dermatographic right now.
Next she asked if I wanted to do any skin testing. I agreed and we decided to do the
environmental ones here because they are different than the ones in Chicago and
also wheat since I mentioned that I had lately had problems with it. Wouldn't it be lovely to chock this up to
traditional allergies?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
So, we did that testing and they had to do the
positive control again (ugh). Today was
a negative test day (I had a slight positive on maple and a very positive
histamine control). If my symptoms do
progress she did mention that we would do blood tests of some sort. For right now, I should come back if I get worse.
That is my absolute least favorite doctor line.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
My take
aways from this appointment: a severe headache and hives.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-43412747065228125262014-05-26T12:09:00.001-04:002014-05-26T19:56:39.323-04:00Low Histamine Week Four - Incredibly Disappointing<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
This was easily the worst week on the low histamine
diet and it was entirely unexpected.
After I did experience some relief during the first two weeks and a
complete resolution of my eczema/chronic rash on my hands by the end of the second week I
honestly expected a wonderful fourth week.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
The week started off with sick kids and thus empty
shelves and fridge at home. It had been
graduation weekend at the university at which my husband works, so he was
unavailable to help at home and the week started off on the poor side. We had eaten at a restaurant Saturday
night. I got a little itchy several
hours later and then Sunday had itchy eye lids.
By Monday, the start of week four, my eyes still weren't great and they
got bad enough that I needed to take an antihistamine. They improved but then with again no food to
eat in the house, my husband brought food home.
I made as wise a choice as I could but got some hives from eating
it. By the next day, things were
improving and I didn't need to take another antihistamine (I generally take 24
hour antihistamines, FYI.) I even had
some blueberries and did not worsen –I would not recommend trying something new
if you have recently reacted to another food item except in desperation.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Wednesday things were close to baseline and we
needed food and some other household things.
I packed up all three kids and we went to Walmart. I got itchy and broke out in hives while
there. This is the third time since 2003
that I have broken into hives after leaving my house. Each time that this has happened it has
signaled the beginning of an extended “body freak out” time. During body freak out times going places,
smelling things, touching things all can cause a reaction somewhere in my body
(hives, weird rashes, asthma attacks, severe joint pain, severe headaches,
intense itchiness, severe fatigue, etc).
Extended body freak out times can last for years – the skin stuff
generally diminishes but the others increase.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Things worsened on Wednesday with my lips and
tongue feeling weird (unusual - I can’t recall having this particular reaction in
the past). I took Vitamin C and
Quercetin and was also to stop the progression and hence avoid going to the ER. My nursing ten month old got enough histamine
and immune compounds to scream all night long, though. I had heartburn and nausea all night long and
didn't get much sleep trying to comfort my baby. He improved after a dose of Benadryl.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Thursday I had gastrointestinal issues and then a
solicitor stopped by (and my kids ran to the window once the doorbell rang so I
felt obligated to open the door – mistake!).
I reacted to his cologne enough that I needed another antihistamine. I had a rash by lunch the next day.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Since I was clearly worsening at an accelerated rate,
I went to my doctor Friday afternoon who referred me to an allergist. While I am waiting for the appointment on
Thursday I will go back to the baseline low histamine diet as best as I can in
hopes to dial back this reaction. By the
end of Friday I was very itchy again and took another antihistamine.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Saturday I woke up very itchy and got itchier as
the day progressed. My eye lids were
also itchy and swelling and the right eye progressed to be very painful,
too. I took an antihistamine just for my
eyes by mid day. I then progressed to
pain all over my body. Nerve pain all
the way to my fingers, pain just to the touch on both of my sides, increased
pain in all the fibromyalgia spots…I took a four hour antihistamine at bed time
to call down my eyes again so that I could sleep. Overall pain was maybe a five but since I was
able to sleep I did not medicate for it.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Sunday I was better over all but still a little
itchy. I was able to go to church but I
didn't actually sit around other people.
Eyes got a little bit worse but resolved after we left. My knees felt unstable like they were going
to bend backwards several times. I also
had a weird pain behind my left knee as if I had pulled a muscle back
there. After dinner I had heartburn and
stiff fingers. With dinner, I did have coconut
flour with is supposed to be ok, I think.
At this point it is hard to tell what is going on.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
So, that was my awful week. I am hopeful that the allergist will be able
to help me sort out this latest week and also what has been going on for the
last twenty plus years.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
What has gone wrong?<br />
<br />
Natural salicylates?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Has food suddenly become a major trigger for me?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Do I need to add a food item and wait more than two days before adding the next?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Do I have a max histamine level that I need to stay
beneath all the time?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Is a high nutrient diet possible for me right now?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
Am I actually reacting specifically to something here
in PA that wasn't in IL?</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
This diet and treatment plan was attractive to me
because I was experiencing warning signs of an approaching body freak out
time. I was very hopeful that by doing
this I could cut off this progression at the very beginning and save our family
perhaps years of grief. I never know
exactly how bad things will be. I am now
a stay at home mom to three young children living far away from family. I appreciate everyone’s prayers for my health. But also pray that we would not be fearful
and trust fully in the Lord. He really
knows what He is doing.<br />
<br />
As always, I have the details of what I ate and what happened on <a href="http://mymastcells.blogspot.com/p/my-low-histamine-experiment.html" target="_blank">My Low Histamine Experiment </a>page.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com2tag:blogger.com,1999:blog-8961603220601637997.post-32413765809323910862014-05-23T18:16:00.002-04:002014-05-23T18:16:39.533-04:00And the doctor said...Go to an allergist! :)<br />
<br />
I do feel much better after this appointment, though. My doctor had heard of Mast Cell Activation Disorders and agrees that my history definitely is in line with a mast cell problem. She also encouraged me to go back to the base low histamine diet to hopefully keep me stable until I see the allergist. If I was not currently nursing my the month old she would have put me on Claritin twice daily with Benadryl for any break through issues since that worked well for me the last time I had a really bad flair up. Granted, once the antihistamines controlled the chronic hives, my "asthma" came back and I was nearly hospitalized. Everything was entirely over once I moved out of my condo and washed all my clothes. Apparently I was reacting to the laundry products of someone else in my building.<br />
<br />
The allergist/immunologist to whom she has referred me will hopefully know about Mast Cell Activation Disorders. My doctor said that this practice is very academic and knowledgeable about current research. I will certainly update everyone once I see the allergist.<br />
<br />
Here is what I will be bringing the allergist:<br />
<br />
My latest rash pictures<br />
<a href="http://mymastcells.blogspot.com/p/about-me.html" target="_blank">My lifelong symptoms summary</a><br />
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/" target="_blank">Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options </a><br />
<a href="http://tmsforacure.org/documents/ChroniclesSE.pdf" target="_blank">The Mastocytosis Society Special Edition Newsletter for Healthcare Professionals 2014</a><br />
<br />
I will keep looking at articles to see what else I might bring but I don't necessarily want to bombard the doctor with too much as they won't likely then read it all. I am now very hopeful that they will have an understanding of mast cell activation disorders and won't even need my resources.<br />
<br />
Thank you to all of you that prayed. I was so incredibly nervous about this appointment. Not everyone in the medical community is open to patients offering up a diagnosis to consider.Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-55371623293212580822014-05-22T12:34:00.003-04:002014-05-26T23:13:46.726-04:00The best laid plans...<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<div style="margin: 0in 0in 0.0001pt;">
On this diet, many of my minors have been better. I
am definitely less itchy and as my pictures demonstrate, the rash on my hands
is gone as long as I am not reacting to something. However, it does seem
that while before this diet my overall health trajectory was a steady worsening with few
bad episodes:<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-GavB8GW3zM0/U34pes4MTnI/AAAAAAAAADw/Wi6xEL7emVc/s1600/IMG_3788.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-GavB8GW3zM0/U34pes4MTnI/AAAAAAAAADw/Wi6xEL7emVc/s1600/IMG_3788.JPG" height="362" width="640" /></a></div>
<br />
<div style="margin: 0in 0in 0.0001pt;">
The last three weeks have felt more like this:</div>
<div style="margin: 0in 0in 0.0001pt;">
<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-lPWCGFRD9Ac/U34pehVB5HI/AAAAAAAAADs/UdmKEIIB0vw/s1600/Day.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-lPWCGFRD9Ac/U34pehVB5HI/AAAAAAAAADs/UdmKEIIB0vw/s1600/Day.JPG" height="480" width="640" /></a></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
(I certainly need to get my new scanner installed.)<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
Why am I suddenly getting more severe episodes?
Before this diet I could tell that I was overall getting worse such that as the
month progressed my overall symptoms were slightly worse but I was not having
severe episodes. I could eat whatever without reacting, I could go to
stores and be around people with perfume/cologne without severe issues. I
could keep up with household chores and get dinner on the table on time each
night.<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
Now, I have severe episodes that knock me out for several
days. Laundry piles up, my floors need to be cleaned and I just can’t tackle
any particular task in my house. I am easily overwhelmed all the time and
so tired. I am very blessed, though, with a wonderful husband that did catch up all my laundry last night which was a wonderful help. He has always taken this illness seriously even when encouraged by others not to do so.<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
To top it off, the episode yesterday almost required me to
go the ER. I took some Vitamin C (another mast cell stabilizer) and
Quercetin which stopped the escalating symptoms. However, even though I was
now stable apparently enough histamine, and perhaps other allergic immune
compounds, made it to my breast milk and caused by nursing ten month
to have an awful night in which he cried almost continuously. If you
recall, I have personal evidence that <a href="http://mymastcells.blogspot.com/2014/04/did-my-illness-cause-my-children-to.html" target="_blank">my children’s reflux/GERD</a> was likely
impacted by my mast cell issues. I finally remembered that I had
children’s liquid Benadryl in the house and gave that to him at 4 am. By
4:30 am he was sleeping peacefully. He woke at 6:30 to nurse again and
went back to sleep until 10 am. After breakfast, he played for a bit,
nursed at 11:30 am and then went back to sleep. Nothing breaks a mother’s
heart more then having a screaming baby that cannot be comforted.<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
A low histamine diet transiting to a high nutrient,
anti-inflammatory might not be easily attainable for me. I was hopeful
that my Aspirin/NSAID allergy would not be an issue for me. However, many
of the natural foods that I am now eating contain salicylates. Aspirin is
a salicylate.<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
I have regularly lamented my allergy to Aspirin and all of
the relatives. When you have things like fibromyalgia, nerve pain, bone
pain and inflammation regularly Tylenol simply doesn't cut it.
Doctors are leery to prescribe narcotics and steroids for an invisible illness
and I am not a big fan of those drugs anyway. So, is one born with a high
pain tolerance or does one develop a high pain tolerance?<o:p></o:p></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
But, I digress.<br />
<br />
It seems that I need to treat more than just a mast cell
issue here. I also have a significant problem with many “healthy” natural
foods. Is it possible that some day I will be able to transition to a
high nutrient, anti-inflammatory diet? Certainly. But right now I
need to likely get some help from a medical doctor. Aspirin
desensitization has been recommended for me in the past and that might be my
next step.</div>
</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-8229385074092911382014-05-19T10:21:00.002-04:002014-05-19T11:14:56.004-04:00Low Histamine Week Three<div class="MsoNoSpacing" style="text-align: justify;">
Week three has been somewhat
disappointing because I was only able to try two high histamine foods and both
caused me to react. Tomatoes and green
beans were routinely eaten several times a week and I was very much looking
forward to having those back in my diet.
Sigh. They so derailed my diet
that I was unable to try anything else this week. I do hope that as my body heals, I be able to
add those food back in my diet<br />
<br />
I am also pleased that my weight has been stable all week long. Since my weight loss has stopped perhaps it was weight related to all the inflammation in my body and not so much a calorie issue. I will continue to closely monitor my weight and will make changes to my diet if need be.</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
From what I have read about
mast cell activation disorder (MCAD), it is fairly common for routinely
consumed items to eventually cause problems.
This is likely due to the leaky gut scenario that many people with a MCAD
experience; after all mast cell degranulation in the gut causes it to leak/be highly
permeable to surrounding tissue. Mast
cells and other immune system components then recognize these undigested food
particles and various bacterial byproducts which normally stay within the gut
as foreign invaders and attack them, thereby further degranulating and increasing
gut permeability. As one can see,
without treating the mast cells in the gut more and more food will likely
become triggers for symptoms if not true allergies.</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
If you would like to learn
more about mast cells relation to leaky gut, <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/" target="_blank">this review article</a> from the
journal Gastroenterology and Hepatology is a good place to start.</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
My goals for this next week include
trying additional, very nutritious high histamine foods like avocado and
blueberries. Additionally, I’d like to purchase
more alternative grains, nuts and seeds to try.
I hope that I will be able to add several more foods to my diet to
protect against the development of new food issues. These are the stepping stones to providing my
body with nutritious food full of phytonutrients and flavonoids that will
naturally stabilize my mast cells and lead to improved overall health.</div>
<div class="MsoNoSpacing" style="text-align: justify;">
<br /></div>
<div class="MsoNoSpacing" style="text-align: justify;">
I also am planning to post
about the invisible illness soon. I
welcome your thoughts on this topic.
Please share with me how your invisible illness has impacted you. If you do not have an invisible illness let
me know what questions you have. I
really want this topic to be well covered and beneficial to everyone. Prayers would be appreciated, too.<br />
<br />
The nitty gritty details of what I ate this week and what happened have been updated on <a href="http://mymastcells.blogspot.com/p/my-low-histamine-experiment.html" target="_blank">My Low Histamine Experiment </a>page.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com2tag:blogger.com,1999:blog-8961603220601637997.post-9619846624865526682014-05-12T14:05:00.001-04:002014-05-12T14:24:09.477-04:00Low Histamine Week Two<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
The second week of a new diet is generally the
hardest – the cravings for what you were eating before can be quite intense and
difficult to ignore. You eat and can feel
full but you are still HUNGRY. In my experience, after two full weeks your
body’s worse cravings are over and you can feel full physically and
mentally. I am so glad to be at that
point. There is generally another hiccup
around one month but it is very useful to have a partner doing the diet change
with you or someone really cheering you on.
My husband has been such a wonderful support for me this time and all
the times in the past when I tried a diet in hopes of relieving some of my
physical issues. He does the diet with
me 100% and doesn't even cheat on the side (if he does while his isn't home he
doesn't mention it). <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span> </div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
The second week of my diet was hard because of the
cravings and hard because the first two days were high pain and fatigue
days. I am not sure exactly what set me
off except that I had not had ice cream that week until Day 7 after dinner. I continued to consume butter and
cooked/baked milk with no issues. I may
try ice cream again at some point but it currently isn't worth two days of my
life. I am certainly hopeful that my
overall health will improve significantly in the future that eating a
particular food item won’t be so debilitating. </div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
I did start a mast stabilizing flavonoid this week
called Quercetin. Quercetin is found in
many different edible plants and was recently found to be <a href="http://www.ncbi.nlm.nih.gov/pubmed/22470478" target="_blank">better at stabilizing mast cells</a> than a prescription drug called Cromolyn. I am not sure yet if what I am experiencing is
psychosomatic, but within about two hours my sinuses felt less
irritated/swollen and have stayed that way.
I still have a continuous headache and post nasal drip, though, so I am
waiting for a more definitive change in symptoms before declaring this
supplementation a success.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
A high nutrient diet automatically contains Quercetin
and many other beneficial flavonoids.
Since that is the ultimate goal of my diet/lifestyle change I also
started to try some of the higher histamine food items this week, all concurrently
with the addition of the Quercetin supplement.
If the Quercetin can keep my mast cells stable and thereby decrease the
amount of histamine (and other inflammatory compounds) already in my body
limiting ingested histamine is not as important. It is important to note, however, that the
best choice for optimum health and keeping your mast cells stable is to spend
that histamine on high nutrient food that contains many beneficial
flavonoids. So, in effect I am taking
Quercetin to help my body ingest more Quercetin and other flavonoids and not to
routinely consume non beneficial high histamine food (fermented, aged, over
ripe fruits, etc).</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
I was very happy to enjoy potato, grapes and
bananas this week. Since they went well,
I will continue to add in more high nutrient food while keeping not beneficial
high histamine food out. I hope that as
my consumption of more flavonoids increases my physical manifestations of a
mast cell activation disorder will diminish.
I am concerned about the berries so will wait a little longer on those
if I can (berries are the only fruit that I truly enjoy). Berries are also naturally high in benzoates
and I definitely react to those in prepared foods and body products (headaches
and rashes, usually).</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
For the details of what I ate and what happened,
please see my <a href="http://mymastcells.blogspot.com/p/my-low-histamine-experiment.html" target="_blank">Low Histamine Experiment Page</a>.</div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt; text-align: justify;">
<br /></div>
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Oh, and here are pictures of my hands.</div>
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Before starting this diet:</div>
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One week on this diet (and post wheat and sunflower
reactions):</div>
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And two weeks on the diet, no significant skin
reactions in over a week:</div>
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<span style="text-align: justify;">I have never recalled in my entire life hands that
looked like these. They also feel like
normal, hydrated skin. </span><br />
<span style="text-align: justify;"><br /></span>
<span style="text-align: justify;">Another clue that I am overall feeling better is that I am not posting as frequently. I have more energy and find sitting at the computer rather boring currently.</span>Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-57056536241171051002014-05-06T11:34:00.000-04:002014-05-16T10:35:53.517-04:00Histamine Intolerance<div style="text-align: justify;">
Histamine Intolerance is another illness that has some of the same symptoms of a Mast Cell Activation Disorder (MCAD). Those with Histamine Intolerance have only an excess of histamine in their body. Their mast cells works appropriately and as such the other compounds released by mast cells are at the appropriate levels.</div>
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As I have mentioned previously, there are two enzymes that break down histamine in the body DAO and HNMT. Those with histamine intolerance have a lower than normal activity of one or both of these enzymes, although most research is focused on DAO. Their histamine buckets, therefore, are markedly smaller than normal and as such regularly overflow. These histamine intolerant people then present with many characteristics of a mast cell disorder.</div>
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HNMT is responsible for degrading histamine within a cell. DAO is responsible for degrading histamine outside of cells and is they key enzyme in the digestive system responsible to degrade ingested histamine. DAO is susceptible to things like an unhealthy bacterial flora or an injured digestive system. Various drugs like alcohol, opiods and certain medications can also inhibit DAO. The first thing suggested to a person with a low DAO activity is to stop ingesting things that inhibit DAO and to treat any injury to the digestive system. This might include taking medication to kill injurious organisms within the digestive system and replacing those organisms with healthy ones. Doing so might then raise the levels of DAO to appropriate levels. However, if the activity of DAO is low due to a genetic defect, this alone will not provide relief.</div>
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The next step would then be to limit the amount of ingested histamine. Fermented, aged, very ripe and left over food are all very high in histamine and hence would be eliminated from the diet. Elimination of other high histamine food, like the ones noted by <a href="http://www.mastocytosis.ca/MSC%20HT%20Restricted%20Diet%20Nov2012.pdf" target="_blank">Dr. Janice Joneja</a>, should also bring quick relief. It is important to note, however, that naturally high histamine food is also quite good for you. The best scenario would then be to limit the fermented, aged, very ripe and left over food and tolerate as much of the good for you food that you can (so pass on the sausage and instead eat a banana).<br />
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Some people also take supplements containing DAO when they eat but this does not always provide relief. The correct dosage of such supplementation and whether supplemented enzyme is active in the digestive system is not currently known.<br />
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If your histamine related symptoms are closely related to food consumption it is likely that you have histamine intolerance and not a mast cell activation disorder. Limiting ingested histamine might then bring significant relief of your symptoms.<br />
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Additionally, pursuing treatment for seasonal and environmental allergies will also help. Doing so will decrease the amount of histamine that your body is producing and empty your histamine bucket significantly. You then might find that you can tolerate ingesting higher histamine food with less problems.<br />
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If you would like to read more about histamine intolerance, check out the article <a href="http://ajcn.nutrition.org/content/85/5/1185.long" target="_blank">Histamine and Histamine Intolerance</a> from The American Journal of Clinical Nutrition.<br />
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For those with MCADs, limiting ingested histamine can be helpful but often is not sufficient to provide significant relief. A high nutrient, anti inflammatory diet is a much better fit as long as it can be tolerated.</div>
Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0tag:blogger.com,1999:blog-8961603220601637997.post-73849348434245836642014-05-05T11:10:00.000-04:002014-05-05T12:51:16.959-04:00How did my first week on a low histamine diet go?<div style="background-color: white; margin: 0px 0px 1em; position: relative;">
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<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">I have now completed my first full low histamine week for the nitty gritty details of what I ate and what specifically happened see </span><a href="http://mymastcells.blogspot.com/p/my-low-histamine-experiment.html" style="line-height: 18.479999542236328px;" target="_blank">My Low Histamine Experiment</a><span style="line-height: 18.479999542236328px;"> page.</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;"><br /></span></span>
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Going from the Standard American Diet (appropriately abbreviated SAD) to really any healthy diet is quite the feat. Nearly everything must be made from scratch and for a low histamine diet key ingredients are removed. The main big things that I had to remove from my diet were also often my favorite foods:</span></span><br />
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<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Yeast</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Cheese</span></span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Cinnamon</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Paprika</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Chili Powder</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Cayenne</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Cumin</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Vinegar</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Berries</span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Stone Fruits</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Citrus (Oranges, Lemons, Limes, etc)</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Grapes</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Bananas</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Tomatoes</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Potatoes</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Sweet Potatoes</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Green Beans</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Soybeans and related products (my soy sauce alternative liquid aminos!)</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;"><br /></span></span>
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">As the week went on, it became clear that I was reacting to wheat and sunflower seeds so those are now also out of my diet. We will see if I have to remove anything else before I can try something like bananas, tomatoes, potatoes or grapes.</span></span><br />
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<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">It took several days to get into the groove of eating this way and then I noticed that I had lost some weight. I started weighing my self on Day 5 and by Day 6 had lost at least eight pounds. As I am currently nursing my nine month old this was concerning me. So, I made sure that every time that I ate I was completely full. Talking with other people with MCAD indicated that this was a normal side effect of this diet. They claim that the weight loss is related to inflammation leaving the body and that could certainly be true for me. </span></span><span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;">Right now I am the weight I was before I had my first child. It might be the case that my new normal weight is lower since I have lost a lot of muscle mass as this disease has progressed and made it very difficult to be physically active.</span><br />
<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 18.479999542236328px;"><br /></span>
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">Honestly, it was quite surprising how the SAD had masked some issues I had been having with commonly eaten food. I do hope that my everyday background symptoms will continue to improve so I really can figure out what in the food I eat or the things that I use are making me sicker. Then I will be able to switch to a much healthier high nutrient, anti-inflammatory diet.</span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;"><br /></span></span>
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">So, did I have any improvement in between the reactions to wheat and sunflower seeds? I can honestly say that the first several days on the diet I felt better. The rash on my hands which had been like this on Day One:</span></span><br />
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Had dissipated by Day Three, but came back after washing my hands at a doctor's office and eating sunflower seeds. The rash still ended up much improved by Day Seven.<br />
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<a href="http://3.bp.blogspot.com/-wF8FfBtL7vU/U2ehx0EAhAI/AAAAAAAAACM/x7yLs6pp4_w/s1600/IMG_3761.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-wF8FfBtL7vU/U2ehx0EAhAI/AAAAAAAAACM/x7yLs6pp4_w/s1600/IMG_3761.JPG" height="213" width="320" /></a></div>
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<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;">I always have this rash on my hands at some level so I was shocked that it was gone at Day Three (I wish that I had taken a picture) and didn't return until Day Five after the new reactions. Additionally, I had some "clearer" feeling days. I really am not sure how to describe that differently except that I wasn't as bogged down and fuzzy like I normal feel. The wheat and sunflower seed reactions took that all away. I really hope that clearer days are in my future.</span></span></div>
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<span style="font-family: Times, Times New Roman, serif;">The other biggest thing that happened this week was that my nursing nine month old who could not comfortably spend much time on his belly now chooses to rollover and sleep on his tummy. On the days that I felt clearer, he also slept straight through the night (he hasn't done that for five months and was on prilosec for reflux pain). The day that I had the hives, he was back to sleeping on his back and waking up. The next night as my reaction dissipated, he went back to sleeping on his tummy but still waking up. As I am still not over those reactions, I am hopeful that his tummy will keep feeling better and he will routinely sleep through the night. At the moment, he is also successfully weaned off the prilosec. If you want to know more about my thoughts on a connection between my illness and my kids reflux, check out <a href="http://mymastcells.blogspot.com/2014/04/did-my-illness-cause-my-children-to.html" target="_blank">this post</a>.</span></div>
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<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
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<span style="font-family: Times, Times New Roman, serif;">The food diary this week also revealed that now that my favorite fruits are no longer in my diet and I am not a big fan of most vegetables, I need to be intentional on increasing the amount of fruits and veggies in my diet. I will be working on that this next week. I am still on my normal vitamins (good ones made from fruits and veggies) so as I make this transition my basic nutritional needs should be met.</span></div>
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<span style="font-family: Times, Times New Roman, serif;"><span style="color: #222222;"><span style="line-height: 18.479999542236328px;">I have found a wonderful community of other people with MCAD and it is liberating to talk with others that understand what I have experienced for the last 20 plus years. It has been incredibly frustrating to be enclosed in a normal looking package but feel incredibly, invisibly ill at the same time. People tend to think that if they can't see that anything is wrong, nothing is wrong. So, this often turns into a silent disease as well.</span></span></span><br />
<span style="font-family: Times, Times New Roman, serif;"><span style="color: #222222;"><span style="line-height: 18.479999542236328px;"><br /></span></span></span>
<span style="font-family: Times, Times New Roman, serif;"><span style="color: #222222;"><span style="line-height: 18.479999542236328px;">More on that later, perhaps.</span></span></span><br />
<span style="color: #222222; font-family: Times, Times New Roman, serif;"><span style="line-height: 18.479999542236328px;"><br /></span></span><span style="font-family: Times, Times New Roman, serif;"><span style="color: #222222;"><span style="line-height: 18.479999542236328px;">P.S. I will never freeze hard boiled eggs to eat at a later date again. The texture is entirely wrong upon thawing.</span></span></span><br />
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Anonymoushttp://www.blogger.com/profile/12648816060259789807noreply@blogger.com0