Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Histamine Intolerance In Celiac Sufferers


Marz

Recommended Posts

Marz Enthusiast

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.

Open Original Shared Link

Open Original Shared Link

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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.

Spudz Newbie

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.

Skylark Collaborator

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!

Marz Enthusiast

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 :)

gf-soph Apprentice

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.