Friday, August 22, 2014

Gluten Free Pizza Crust

Gluten Free Pizza Crust

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.

2 t yeast (or use one packet which is just a bit more)
1/2 c water, warm enough to proof yeast
1 t sugar
1 egg
2 1/2 c oats
1/2 t salt
1 T olive oil
1 t minced garlic


Preheat oven to 450 degrees F.  Whisk together the water, yeast and sugar in a small bowl.  Set aside for about five minutes. 

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.

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.  

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.

We generally double this recipe and make two pizzas.

Thursday, July 31, 2014

What is it like to have a Chronic Illness?

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?

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.

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.

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.

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.

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.

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.

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.

The guilt, though, and the longing for a normal amount of ED!

I do hope that this glimpse into my life has blessed you in some way.

Monday, July 14, 2014

Low Histamine Italian Pork Tenderloin

Here is a recipe that our family has enjoyed that is easy to make, tastes wonderful and is also low histamine.

Italian Pork Tenderloin

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.


2 T Italian Seasoning
1 t garlic powder
1 t onion powder
1 t salt
1 t black pepper
~ 2 T Olive oil
2 lb pork tenderloin

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. 

This serves eight 3 oz. portions.

If you are sensitive to any of the seasonings, sub them with other ones.

Saturday, July 12, 2014

What I learned during our two week trip

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.

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.

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.

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.

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.

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.

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.

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.

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.

Tuesday, June 24, 2014

Why didn't you know?

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 full extent of my illness.  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.

I think that there are two distinct reasons for my silence up to this point.  One is external and one is internal.

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?

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.

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.

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.

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?

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.

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.

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.

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.

I am working on the internal reason for my silence.  Will you work on the external? 

Monday, June 16, 2014

How are things with the trigger gone? (post one week)

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.

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.

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.  :)

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.

Thank you all for your prayers and support!

Monday, June 9, 2014

A potential answer?

On Monday, May 12th, I started my third week on the low histamine diet recommended and modified by the Mastocytosis Society Canada.  Also on that day, my husband received a new leave in hair product that you apply after shampooing and conditioning and started it immediately.

Week three 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.

Two days after my week three summary, I posted 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 week four and my husband and I began to frantically look for a cause.  Seeing my doctor 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.

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 that appointment 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 week five, we decided to restart the low histamine diet to see if taking out the added foods would improve my health.

After four days 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.

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.

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.

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.

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.

Wednesday, June 4, 2014

Midweek Update - Yet another change of plans

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?

On 04/28/14 I listed my symptoms before starting my low histamine experiment:
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.

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.

I have had fibromyalgia for as long as I can remember.  Medications do not help and severity comes and goes but is always present.

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.

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.

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.

When I was 29 I started having significant memory issues.  While documented, no cause has been found.

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.

I am occasionally dermatographic.  I periodically have hives lasting as long as six months.

I am generally an itchy person.

My eye lids randomly swell and turn red.

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.

I am fairly ill for approximately one half of my menstrual cycle each month.  Birth control pills make it worse.
Except for the eczema on my hands, nothing is different.  My illness is moving from chronic to acute again. 

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.

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.

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.

Monday, June 2, 2014

Low Histamine Week Five

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 disappointing allergist appointment, 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.  

My husband and I came up with The Plan.  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:

sunflower seeds
ice cream

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.

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.

Week Five details will be on My Low Histamine Experiment page.

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.

Friday, May 30, 2014

The Plan

I have a wonderful husband.  Once he got home we talked about this all and came up with a plan.

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?

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.

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.

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.

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.

Now What?

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.

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

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?

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?

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?

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.

Since I essentially have no medical support right now I am left with a few choices:

Pay out of pocket to see another medical professional
Get really pushy with my PCP or the allergist to get diagnosed
Try a low salicylate diet to see if that is what derailed my low histamine diet
Try a low histamine, low salicylate diet hybrid

I am not sure which way to go. 

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?

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?

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?

Thursday, May 29, 2014

My Allergist Appointment

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. 

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.

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?”


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.

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.

In fact chronic hives have no known cause…

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.

When I am not nursing and am done having children I should pursue aspirin desensitization.

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.

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?

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.

My take aways from this appointment: a severe headache and hives.

Monday, May 26, 2014

Low Histamine Week Four - Incredibly Disappointing

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.

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.

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.

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.

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.

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.

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.

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.

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.

What has gone wrong?

Natural salicylates?
Has food suddenly become a major trigger for me?
Do I need to add a food item and wait more than two days before adding the next?
Do I have a max histamine level that I need to stay beneath all the time?
Is a high nutrient diet possible for me right now?
Am I actually reacting specifically to something here in PA that wasn't in IL?

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.

As always, I have the details of what I ate and what happened on My Low Histamine Experiment page.

Friday, May 23, 2014

And the doctor said...

Go to an allergist!  :)

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.

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.

Here is what I will be bringing the allergist:

My latest rash pictures
My lifelong symptoms summary
Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options
The Mastocytosis Society Special Edition Newsletter for Healthcare Professionals 2014

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.

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.

Thursday, May 22, 2014

The best laid plans...

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:

The last three weeks have felt more like this:

(I certainly need to get my new scanner installed.)

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.

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.

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 my children’s reflux/GERD 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.

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.

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?

But, I digress.

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.

Monday, May 19, 2014

Low Histamine Week Three

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

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.

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.

If you would like to learn more about mast cells relation to leaky gut, this review article from the journal Gastroenterology and Hepatology is a good place to start.

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.

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.

The nitty gritty details of what I ate this week and what happened have been updated on My Low Histamine Experiment page.

Monday, May 12, 2014

Low Histamine Week Two

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).  J 

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.

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 better at stabilizing mast cells 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.

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).

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).

For the details of what I ate and what happened, please see my Low Histamine Experiment Page.

Oh, and here are pictures of my hands.

Before starting this diet:

 One week on this diet (and post wheat and sunflower reactions):

And two weeks on the diet, no significant skin reactions in over a week:

I have never recalled in my entire life hands that looked like these.  They also feel like normal, hydrated skin. 

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.

Tuesday, May 6, 2014

Histamine Intolerance

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.

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.

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.

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 Dr. Janice Joneja, 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).

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.

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.

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.

If you would like to read more about histamine intolerance, check out the article Histamine and Histamine Intolerance from The American  Journal of Clinical Nutrition.

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.

Monday, May 5, 2014

How did my first week on a low histamine diet go?

I have now completed my first full low histamine week for the nitty gritty details of what I ate and what specifically happened see My Low Histamine Experiment page.

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:

Chili Powder
Stone Fruits
Citrus (Oranges, Lemons, Limes, etc)
Sweet Potatoes
Green Beans
Soybeans and related products (my soy sauce alternative liquid aminos!)

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.

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.  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.

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.

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:

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.

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.

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 this post.

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.

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.

More on that later, perhaps.

P.S.  I will never freeze hard boiled eggs to eat at a later date again.  The texture is entirely wrong upon thawing.