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.

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.

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:

Yeast
Cheese
Cinnamon
Paprika
Chili Powder
Cayenne
Cumin
Vinegar
Berries
Stone Fruits
Citrus (Oranges, Lemons, Limes, etc)
Grapes
Bananas
Tomatoes
Potatoes
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.

What are the common drugs used to treat Mast Cell Activation Disorders?

The majority of the drugs used to control Mast Cell Activation Disorder and Mastocytosis are commonly known.  There is currently no cure for these diseases so it is important to note that these drugs only control symptoms to make life more manageable.

The first class of drugs are referred to as H1 blockers.  These are the conventional antihistamine drugs that many people take for seasonal allergies: Zyrtec/Cetirizne, Claritin/Loratadine, Atarax/Hydroxyzine, Allegra/Fexofenodine and Benadryl/Diphenhydramine. They generally diminish the physical symptoms of itchiness, runny nose, headaches and hives.

Another set of drugs block the H2 receptors found in the digestive track.  Some of those drugs are Zantac/Rantidine, Axid/Nizatdine, Pepcid/Famotidine and Tagamet/Cimetidine. They diminish the amount of acid that is released in the stomach and hence help with heartburn and acid reflux.

When the normal H2 antagonists do not work proton pump inhibitors like Priolosec/Ompreazole, Prevacid/Lansoprazole, Dexilant/Dexalansoprazole, Nexium/Esomeprazole, Protonix/Pantoprazole, and Aciphex/Rebeprazole and used.

People with Mast Cell Activation Disorder or Mastocytosis generally take at least double the normal amount of H1 and H2 drugs or will take multiple drugs of the same class in a given day. Taking the normal doses generally is not helpful since there is such an excess of histamine present.

There are not currently any routinely recommended medications for the H3 receptor located in the brain or the H4 receptor located in bone marrow.  These receptors are not even well understood at this point in time.  Many people are currently researching these receptors and working on finding appropriate antagonists/blockers.

It is important to note that mast cells do not simply release histamine.  Mast cells also release serine proteases like tryptase, serotonin, and preoglycans (mostly heparin).  They also release newly formed lipid mediators like thromboxane, prostaglandin D2, leukotriene C4, and platelet-activating factor.  Finally they also release the cytokine eosinophil chemotatic factor.

Is it clear now why Mast Cell Activation Disorder and Mastocytosis have a widely varying, complex presentation?

Since so many biologically active compounds are released when a mast cell is activated, there are many additional drugs used to control the related symptoms.  I'll elucidate some of the drugs that act against those compounds and the symptoms they diminish in a future post.

If you want to know some of the recommended drugs beyond what I have briefly covered here right now, check out this page from The Mastocytosis Society Canada.