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Does Dh 100% Mean Celiac?

phil1

By phil1
in Dermatitis Herpetiformis

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phil1 Apprentice
phil1
Posted

I tested negative for celiac 6 years ago, but since have cut out gluten and felt much better (still have lots of problems though). My sister cut out gluten, too, and no longer has any problems. I have DH and it was a lot worse when I was eating gluten, but I still have it. I'm seeing a doc on Friday, a celiac specialist, and I'm hoping that he can confirm that I have celiac based on my DH and dispite my negative test results from years ago. I refuse to eat gluten for 3 months or how ever long it is for regular celiac tests. Can he diagnose celiac by diagnosing DH? I'm afraid that he's going to assume that I don't have celiac based on my previous test, and I'm pretty damn sure that I have it.

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psawyer Proficient
psawyer
Posted

My understanding is that a diagnosis of Dermatitis Herpetiformis is absolute confirmation of celiac disease. The treatment is the same: a gluten-free diet for life.

If your DH persists, look for possible gluten sources that you have missed.

pricklypear1971 Community Regular
pricklypear1971
Posted

If you are seeing a Celiac specialist he should know the nuances of dh.

Testing may be problematic if you are gluten-free because even dh testing depends on finding IgA antibodies-which fall even while dh remains active when you are on a gluten-free diet.

You may get lucky and be dxed based on visual inspection and symptoms and history. It's worth a try.

You should look into a low iodine diet, as well as intolerances like salicylates. Those can keep dh active even on a gluten-free diet.

eatmeat4good Enthusiast
eatmeat4good
Posted

Iodine can keep the DH active.

I didn't heal until I eliminated all traces of gluten and went low iodine.

It took me 14 months to get healed. As Peter says, look for traces of gluten. I missed several things and was always surprised at what a violent reaction my DH would have even to low level trace glutening.

See thyca.com for a low iodine diet. (it is not a no-iodine diet)

We do need a certain amount of iodine but limiting it is sometimes necessary for the healing of DH.

DH is Celiac. A skin biopsy can diagnose it but it is not always positive even if it is DH. As Prickly pear says if you are gluten free the chances of testing positive go down. My Dr. gave me the diagnosis based on observing the rash and my repeated reports of glutening triggering the reaction again and another round of painful itchy sores. It took 3 years of treating it for impetigo, fungus, anti-virals, bacteria, acne, neurotic excoriation, until the day I stumbled here and realized it was DH and the cause was gluten. By verbal report of healing on going gluten free and the Dr. observing the healing...I was diagnosed. For some reason my rash is also sensitive to salicylates. I often took ibuprofen for the pain and itching and inflammation of DH. On reading I learning that many with DH are particularly sensitive to NSAIDS and they should not be used by those with DH. Just some tips. Hopefully the specialist will help you. Good luck.

itchy Rookie
itchy
Posted

I tested negative for coeliac for many years.

I was finally able to convince a dematologist that I had DH, though paradoxically he refused to give me a formal diagnosis without me eating gluten for a while and having my skin biopsied. Needless to say, I refused to torture myself that way.

I suspect many physicians and dematologists will also refuse a formal diagnosis. (I hope anyone with opposite experience will post) So far I haven't needed a formal diagnosis for anything though I can see that it might be important at some time. A medical insurance company was quite willing to believe me when I said I had DH in order to turn me down for coverage of that condition, but I suspect that if I had made an insurance claim earlier they would have refused without a formal diagnosis.

Fortunately I live in Canada, so only need insurance for travel.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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