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Dermatitis Herpitiformis?


lilizzyykittyymom

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lilizzyykittyymom Newbie

Does anyone think this looks like Dermatitis Herpitiformis?

I have seen three doctors who are stumped.. the last one last night said he would get me into a dermatologist today (the quickest I could make an appt was April 1st) and I do have an appt later today but looking for some more insight and I was led here...

It's starting to itch and burn, today is day #17 of this rash or whatever it is. My kids, nor no one else I know has it.

These are from last night.

Leg

spots027tk5.webp

Other leg

spots026bm1.webp

Front of one leg

spots032rt2.webp

Belly

spots025si2.webp

Arm

spots020qv4.webp


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lovegrov Collaborator

It doesn't look anything like my DH did. Mine looked like large clear blisters.

richard

nora-n Rookie

Mine were small like those in the picture but more clear liquid containing. I am still waiting for the biopsy results. Mine burn. I had another outbreak two weeks ago, behind the ears.

There is a DH folder here, but there may be more people here.

nora

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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