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Can Dermatitis Herpetiformis Develop After Going Gluten-Free?

MitziG

By MitziG
in Related Issues & Disorders

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MitziG Enthusiast
MitziG
Posted

My daughter was diagnosed with Celiac via biopsy 3 months ago. Aside from mild eczema, she was basically asymptomatic and was tested as a result of her brother and myself having celiac. She has been strictly gluten free since then. I decided to take her off dairy cold turkey about 5 weeks ago to see if that would make a difference with her eczema. About 2 weeks after going dairy free, she developed a bad case of what I thought was ear eczema-splitting and crusting first behind the ear, in the crease, then developing blisters and sores on the outside of ear and in the ear canal. I thought maybe it was a reaction to de-toxing from dairy. I started letting her have a little bit of dairy every day to hopefully slow down the process, thinking maybe cold turkey wasnt the best idea. Now she has developed little clear blisters on her nose and chin which burst open and which she picks at so that she now has huge oozing sores all over her face, ears and a few on her arms. She says they dont itch though. I am wondering if this is dermatitis herpetiformis possibly? Is that ALWAYS itchy? and would that develop AFTER quitting gluten? Or is it related to the dairy? I am taking her to the doctor tomorrow, but considering their general ignorance of all things celiac related thus far, I dont expect them to really have a clue either. Any help and advice is appreciated!

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cassP Contributor
cassP
Posted

my DH did not show up until 1 week after going 100% gluten-free for the first time. it lasted for 4 months. it was pretty itchy. had some bumps on my arms too- they itched sometimes, and burned others.

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  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
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      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr. https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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      Hello Russ! Thank you so much for your reply. I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal...
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      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting...
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    • Aretaeus Cappadocia
      Skin issues

      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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