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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Marz

Histamine Intolerance In Celiac Sufferers

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I have quite a mysterious problem, in addition to the normal GI issues I've been having.

I've self-diagnosed that I'm intolerant to histamine in any form, as well as foods that tend to stimulate the release of histamine directly from Mast cells (specific cells involved in the immune reaction).

My symptoms are severe headaches, sinus pain, extreme "tooth-ache" that radiates into the sinuses, and frequent sinus infections.

Basically, if I eat a large slab of chocolate, within a day or two I'm guaranteed to come down with a cold/sinus infection.

If I eat an Avo, I'm guaranteed to get a severe headache or sinus/tooth-ache within a few hours.

I seem to tolerate cheese, however, which should be high in histamine...

From my research, I've found that it's caused in 2 ways - either the person lacks a specific enzyme (Diamine oxidase) secreted on the intestinal wall (And you can see where I'm going with this :) ), or the person is deficient in a cellular enzyme elsewhere (Histidase), which decomposes the histamine within the blood.

Scientific explanation of Histamine and histamine intolerance

More info on Histamine-releasing and high-histamine foods

I'm very interested to hear if anyone had histamine-overdose reactions after eating the big culprits - Cheese, Chocolate, Wine - and if it got better on a gluten-free diet. I would love to be able to eat chocolate again without getting sick!

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In my case, and I was very far along as far as celiac goes, when I had allergy testing done before diagnosis I showed an allergic reaction to all but one of the 99 things I was tested for. That prompted my allergist to put me on the elimination diet and I was finally on the road to my celiac diagnosis.

For me after a time gluten free almost all those allergies resolved. The allergist said my immune system was in hyperdrive and that was why I was reacting to everything. After the gluten free diet calmed down my immune system the 'allergies' resolved.

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Considering the sequence of events that resulted in my doctor suspecting gluten-intolerance, I found your post interesting. Over the years, I had gradually reduced my consumption of grain products. I incorrectly interpreted my adverse reactions to eating refined grain products, and didn't consider the gluten component. But, after reduced symptoms during an anti-inflammatory detox which eliminated gluten, I reacted badly to wheat and rye during the subsequent food challenge. As a result, I returned to eating only the foods allowed during the detox. After several weeks of "clean" eating, I ate a fast-food pita wrap (which in addition to a high-gluten content also contained many fermented foods) and experienced a return of digestive problems plus a few new symptoms: flushing, intensely itchy hands and feet and a rash on all skin exposed to natural light. A search on the internet led me to consider some sort of mast cell disorder.

My doctor suggested trying antihistamines as an easy way to determine whether excess histamine might be involved in my new symptoms. It was at this appointment my doctor requisitioned a celiac disease screen (no results yet).

I skimmed through the two websites you attached, thanks. I react adversely to at least some of the high-histamine foods -- some cheeses, chocolate, shellfish, etc., but didn't make the connection while still eating gluten because my symptoms were chronic. Of particular note, I am hypersensitive to food preservatives (sulphites, benzoates, etc.) and have never tolerated alcohol (fortunately not a problem since I've never enjoyed beer, wine or spirits). I've been back on a gluten-free diet for 10 days now after eating gluten at every meal before testing. So far, the intense "histamine" symptoms I experienced after eating the high-gluten, high-histamine pita wrap are significantly less. I can't say for sure if this improvement can be attributed to the gluten-free diet, or whether taking one regular-strength Reactine per day is also helping. I suspect it may be a bit of both. I can say that eating gluten-free has reduced my previously industrial-strength headaches.

I, too, would love to eat chocolate (and cheese) without feeling worse afterwards. Due to my numerous auto-immune illnesses, it seems my diet is becoming increasingly restricted. I guess I could say I'm currently eating a "Scratch-prepared, low-GI, low-acid, low-histamine, low-purine, anti-inflammatory, gluten-free diet". Yikes!

Have you tried "dry skin brushing" for your sinus problems? This was recommended to me by a naturopath, and it really seems to help clean out the sinuses. If interested, check the internet for instructions. Best of luck, Marz.

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Both my dad and I don't tolerate red wine very well. Histamine and sulfites is a nasty mix for folks with allergies and asthma!

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I guess I could say I'm currently eating a "Scratch-prepared, low-GI, low-acid, low-histamine, low-purine, anti-inflammatory, gluten-free diet". Yikes!

Wow, hopefully once your gut has healed (if that is the problem), your diet can become less restrictive.

Have you tried "dry skin brushing" for your sinus problems?

Yikes, sounds scary, but I'll check it out. The sinus problems aren't too bad, maybe a sick day off work once a month or so.

If gluten is the problem, and these are your initial symptoms, I'd definately recommend staying off gluten. This histamine intolerance was the first symptom for me, and from there it went downhill over a period of a few years. I'm now definately "intolerant" to chicken and turkey - very, very bad stomach problems between 2 hours to a day or so after eating it. Then even after cutting out fowl, I started getting random GI issues from then on. I can't believe that a few years ago I was happily pigging out on anything and everything I could see, with no sinus/headache/GI issues.

Good luck to you too with sorting out your issues :)

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I saw my dietician yesterday, and she has put me on a low chemical diet, that is, low in amines, salicylates and glutamate (as well as preservatives, articifical sweeteners and general processed junk). These are the three food chemical groups that the RPA (Royal Prince Alfred Hospital) elimination diet targets. They way it is viewed is that there are varying amounts of these chemicals in certain foods. Everyone has a certain tolerance for the chemicals, and these chemicals build up in your system over time.

If you have an amine problem you have a certain tolerance for them. If you eat a little chocolate one day you may be fine, but if you eat a little chocolate, then the next day have some cheese, then over time you can reach your limit by having combinations of the problem foods. If you are highly sensitive you may reach your limit after a single small serve.

I don't have allergies but I can get terrible face flushing with nasty headache after eating some foods (especially MSG, mono sodium *glutamate*) and maybe salicylates, and this only goes down with antihistamines. So I too am getting interested in the histamine issue.

My dietician is trainined on how to use this specific elimination diet. She thinks that I am generally chemically sensitive, as most of my regular foods are high in problem chemicals (tomatoes, avocado, goats cheese and berries are now off the menu).

It could be worth a look if you are interested.

edit - amine levels in cheese depend on the type - cheese like ricotta and cottage cheese are fairly low, basic mild cheese like tasty are medium, while aged cheeses like cheddars and brie are much higher. You also get higher amines in cured or old meat, which may be something to look out for.

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