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Gluten-Free, But Now Dh?

icuski2

By icuski2
in Dermatitis Herpetiformis

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icuski2 Newbie
icuski2
Posted

Hello everyone. I was diagnosed with Celiac 14 months ago and have been gluten-free ever since. I never had any lesions or rashes when I was eating gluten or the 13.5 months after stopping. However, this past week I got two patches of somewhat itchy, very painful patches of a blistery rash on my upper thigh and a hip. The areas almost seemed bruised, purple-ish and sore underneath with bright red blisters on top. I'm wondering if it could be the DH I have heard about?! If so, does it mean I got in to some gluten? (I try to be very compliant in my diet, but I am not super sensitive - stomach issues wise - to when I do get some gluten accidentally.) Or in reading here, seems it may be connected to iodine? I am confused. Once you get it, does it come back easily? And always in the same spots? If I do get it again, is there anything I could/should do to clear it up? I don't really have a medical professional treating me for the Celiac, so I find this website my best source of information. Any suggestions/ideas/information is much appreciated!

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eatmeat4good Enthusiast
eatmeat4good
Posted

I read through the archives of DH and learned that yes, it seems to happen to some people, that they get their first outbreak of DH AFTER going gluten free. I cannot say whether your rash is DH or not, but the blistery rash does make one suspicious that it could be DH. If it is, you could get it biopsied next to the lesions on clear skin and that is considered a postitive diagnosis for Celiac disease. If however, you do not want to go that route,(bear in mind that your biopsy can also be negative if you are not eating gluten) then you will need to be super strict about avoiding gluten and iodine until the lesions heal. Iodine can keep the antibodies reacting and the lesions will continue to be active. I had to avoid iodine strictly for 3 months in order to heal my lesions. I was being super strict about avoiding gluten but really didn't start to get healing of the DH lesions until I started to strictly avoid iodine too. No salty nuts or chips, only ate meat, chicken, vegetables, fruit and nuts. Iodine is in asparagus, fish, shellfish, eggs, dairy, and iodized salt. You can use uniodized salt until you heal. I am just starting to add small amounts of these foods. Until now, I would get the same reaction I get to gluten...the sores would flare and hurt or itch like mad...they would seem to start healing and then flare again with the slightest intake of salted foods or fish. Even with avoiding both gluten and iodine, it has taken a full 3 months to heal and I still have a couple of spots that are not quite healed.

It is really maddening. I hope you heal faster than I did.

mushroom Proficient
mushroom
Posted

My husband developed DH after going gluten free with me, but only after he had been cheating a bit, with a little sourdough french bread here, an occasional beer there :o Made a believer of him (he had been told he was 'borderline' celiac). :P

itchy Rookie
itchy
Posted

icuski2: I was much like you, for fifteen years I casually avoided gluten because I knew I was sensitive to it. I wasn't very strict. Then I went back on gluten for a couple of days because my gastrointestinal symtoms had disappeared. Within days I started getting a severe rash that turned out to be DH.

The DH is much more sensitive to gluten than my GI symptoms ever were. Also, many people are sensitive to iodine as well, because iodine is part of the process by which the DH symptoms appears though they are not the cause of DH. In theory, once we have completely eliminated gluten, and the DH factors in our skin have cleared (a slow process often taking months) then we won't be sensitive to iodine and can consume it normally in our foods.

  • 4 weeks later...
GFREEGURL Newbie
GFREEGURL
Posted

Is HD similar to Eczema? I have been told my whole life the reason for my itchy skin is because of eczema. Are these two skins problems related or one and the same?

kareng Grand Master
kareng
Posted

Here are some pics of DH. You can probably find others, too.

Open Original Shared Link

itchy Rookie
itchy
Posted

gfreegurl: they aren't the same thing. But many physicians will diagnose DH systems as eczema. Mine admitted that the lesions on my arms were DH, but insisted that the somewhat different looking rash on my shins were eczema. Ignoring my protestations that both 'stung' rather than itched and both were improving with a gluten free diet.

If you are celiac and have itchy rashes, I would suspect DH.

I had various minor but persistent rashes and bumps on my skin for years which either morphed into DH or disappeared when I when gluten free.

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      @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
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      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 😅
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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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      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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