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Is this dermatitis herpetiformis?

Jordan Carlson
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Jordan Carlson Apprentice
Jordan Carlson
Posted

Is that what this is? I am newer to the celiac scene lol. Always thought it was eczema that would never end. But makes a lot of sense if it is dermatitis herpetiformis!

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Scott Adams Grand Master
Scott Adams
Posted

It's hard to say from the photo, but if you have celiac disease it could be DH. Do you get tiny, hard, clear blisters in that area, and is it super itchy? 

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Jordan Carlson Apprentice
Jordan Carlson
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Posted

sorry, didn't realize the picture was so horrible lol. But yes to all of the above. The small darker areas in the photo are the little blisters on my hand.

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Scott Adams Grand Master
Scott Adams
Posted

So if you have DH, it usually means that you are super sensitive to very small amounts of gluten, and to get rid of the DH you need to be 100% gluten-free, and this may mean avoiding eating at restaurants, unless you can be certain the food is 100% gluten-free.

If you have DH you will may also need to avoid foods high in iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

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Jordan Carlson Apprentice
Jordan Carlson
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Posted

Thank you very much for the info Scott! And the seafood and dairy products makes a lot of sense now.  As much as the dermatitis herpetiformis (if that is what it is) would get better, It still has minor flare ups but I do eat a lot of seafood and do have milk here and there so it very well could be that. 

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    • Julianne101
      Seeking proper diagnosis

      By Julianne101 · Posted

      Thank you for the feedback!  I realize the restaurant meal was probably contaminated but I had no idea a reaction to gluten could last so long!  I’m hoping I find a doctor who will take me seriously.   Is Imodium or Pepto Bismol safe to take to manage symptoms?  
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      By trents · Posted

      Welcome to the forum, @Julianne101! Your experience is exceedingly common in the celiac community. First, regardless of how gluten free the food was in the restaurant experience you described actually started out to be, you have no idea what measures were taken in the cooking, preparation and handling to prevent cross contamination. Sounds like to me you are either getting gluten from some unexpected source or you have developed additional food intolerances. It is very common in the celiac community to be intolerant to dairy (CMP or Cow's Milk Protein) or to oats (even gluten free oats, the protein avenin) which have proteins similar in structure to gluten and can be cross reactors.
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      By Julianne101 · Posted

      I'm new to this forum.  My sister was diagnosed with Celiac disease 20 years ago right around the time my 2 year-old daughter developed a swollen belly, prolapsed bowell (constipated), intense sweating, etc.  So, my sister suggested maybe it might have something to do with gluten.  My daughter's gastroenterologist said he didn't want to put her through an endoscopy (her blood test was negative) but I was welcome to try the strict gluten-free diet if I felt like it.   I did, and sure enough, withing a couple of days all of her symptoms disappeared.  I was shocked the first time I got her up from her nap and she wasn't literally drenched in sweat.  So, I decided to try the strict gluten-free diet too.  I was very sick with my pregnancy for my daughter and never really felt good since, lots of GI issues (gas and bloating primarily). I found that my symptoms also disappeared on the gluten-free diet.  So, I have been gluten-free ever since.  I avoid milk (except for cheese) because it causes gas and bloating.  Fast foward 19 years to just 1 year ago.  I started taking a new probiotic to try to ease menopause symptoms.  The next day I had sever diarrhea.  I thought that was weird, so I stopped taking the probiotic and started to feel better, but then the diarrhea came back a day or two later and remained on and off every few days for three months! It was nothing like food poisoning or the GI bug.   I got tested for parasites and other infectious diseases but everything came back negative.  So, I thought maybe I was developing a more severe form of gluten intolerance.  I also found out that right around the same time that I got the diarrhea, my brand of oat milk had changed their formula and was no longer using gluten-free oats, so maybe that was the cause. AFter three months, the diarrhea finally cleared up and I became much more vigilent about gluten contamination.  A couple months later I ate out at a restaurant.  The meal was labeled gluten-free, I clarified with the waitress, but the next day the severe diarrhea was back and this time it lasted two months but finally cleared up!  A couple months later, and I am cuurently in my third episode of diarrhea, and I have no idea what may have caused it. I've been to a Gastroenterologist who has tested me for everything under the sun and finds nothing wrong with me.  My colonoscopy is perfect, endoscopy perfect, IgA 184 (normal range), and several other tests all normal except for high eosinophils.  I've lost 20 pounds and struggle with dehydration.  I'm very curious, has anyone else with Celiac disease ever experienced anything like this?  Can people have a gluten contamination reaction last for 2-3 months like this?  The NP I saw in the GI Clinic claims my diarrhea has nothing to do with gluten, but I'm not so sure.  I've asked for a referrral to a specialist.  
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