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Symmetry? And Biopsy Location


SpikeMoore

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SpikeMoore Apprentice

Hi there

I am wondering if you must have a symmetrical rash to be DH. I only get rashes on one side or the other at one time, but they are suspicious for DH in all other respects.

Also wondering about the location of the biospy. Is it a lesion that should be sampled or an area of skin that is not in the rash that should be sampled? My GP took a lesion biopsy and it came back inconclusive. Went gluten free and haven't had any rashes since! (6 weeks now)

Any advice would be helpful.

Thanks


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teebs in WV Apprentice

Everyone is different - I am sure someone out there has DH that is not symmetrical - but it typically is (mine is). The biopsy needs to be beside a lesion - not an actual lesion. My biopsy was taken right beside one on my elbow and came back positive.

Good luck - I hope you figure out what your issue is. Although if the gluten-free diet has helped you I would definitely stick with it! It really isn't that bad after you get used to it - I try to look at it like "it could be worse". :)

Sandyo Apprentice

Can you explain why the biopsy should be beside the lesion and not the actual lesion itself? I've been fighting a rash for three years now and they biopsied the lesion and told me it was Grover's Disease. It used to not ich but it's starting to. It goes away if I take Acutane. I've been gluten free for 6 months, but I'm sure I not as strike as I should be and I know I'm becoming more intolerant to gluten.

Sandy O

teebs in WV Apprentice

I honestly do not know why - that is what I have read in my personal research. Someone else on here may know.

Anyone???

  • 2 weeks later...
BeverlyH Newbie
Can you explain why the biopsy should be beside the lesion and not the actual lesion itself? I've been fighting a rash for three years now and they biopsied the lesion and told me it was Grover's Disease. It used to not ich but it's starting to. It goes away if I take Acutane. I've been gluten free for 6 months, but I'm sure I not as strike as I should be and I know I'm becoming more intolerant to gluten.

Sandy O

Hello Sandy O, I was diagnosed with Grover's Disease 2 years ago and it's gotten progressively worse. I do not fit the "mold" for Grover's. I'm a woman, have it on my scalp, arms, hands, trunk, and legs. All the cortissone creams on the planet haven't helped. I had to take Prednisone for an ecxema rash and the Grover's went away as did the ecxema, but Prednisone isn't recommended for Grover's. I haven't tried Accutane yet, but that's next on my list. The docs biopsy clear skin (non-lesion affected) so they can get an analysis of all potential skin diseases, not just the area that's affected. My father was allergic to gluten, so I'm going to try a gluten-free diet. I'm new on this forum, but will keep checking for new treatments for Grover's.

Beverly H

tricialee Newbie
Can you explain why the biopsy should be beside the lesion and not the actual lesion itself? I've been fighting a rash for three years now and they biopsied the lesion and told me it was Grover's Disease. It used to not ich but it's starting to. It goes away if I take Acutane. I've been gluten free for 6 months, but I'm sure I not as strike as I should be and I know I'm becoming more intolerant to gluten.

Sandy O

A positive biopsy consists of a specific microscopic appearance of granular deposits in the skin that are seen by a direct fluorescent antibody test for IgA-type antibody deposits. The deposits are widespread in the skin, and don't disappear until after months or even years on a gluten-free diet. Within the DH lesions, however, the pattern of granular deposits is disrupted or destroyed by the inflammation. Therefore, in order to see the classic pattern, it is necessary to biopsy the skin near a lesion, but not that skin directly involved in the blisters and rash.

Since the deposits in the skin are so widespread and long-lasting, doctors don't know why some areas are affected by lesions and others not, nor what triggers the attacks. Some correlations/theories I've seen include minor trauma to the skin, exposure to iodides, hormonal fluctuations, and, of course, increased ingestion of gluten.

SpikeMoore Apprentice

Thanks for that excellent and concise explanation, Tricialee!


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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.
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      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.
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      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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