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dermatitis herpetiformis


Suenthe4cs

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Suenthe4cs Newbie

Hiya I'm new to this page I've recently been suffering from recurrent ear infections and the ent doctor has said it is related to a skin issue, but I have been suffering from an itchy blistery type rash that after some research I'm wondering if You think it could sound like dermatitis herpetiformis? It's itchy and blister like.. But mainly in scalp on hair line or chest 

I do have other symptoms of celiac disease I have had low b12 but - intrinsic factor when tested for 6 years now although have a family history of pernicious anaemia, bloating gas brain fog etc.

ive had a blood test for antibodies this week but was negative but when I do finally see a dermatologists is it worth askin them to test ?

thanks

 


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captaincrab55 Collaborator

Make sure you chose a Dermatologist that is actively treating patients with DH.      I saw 4 Dermatologists in 30 years before I found one the would listen to me and knew how to test for it.    The test takes 2 weeks for tissue results.    

GFinDC Veteran

Hi, yes, it won't hurt anything to get tested.  They test by taking a small biopsy sample of skin next to a blister/lesion, and analyze it for IgA antibodies.  At least I think that's right.  There is more info in the dermatitis herpetiformis section of the forum.

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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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