I'm So Frustrated And Disappointed.

[Guest Chrisbee]

My biopsy came back as non-specific inflammation, so my dermatologist won't say one way or the other if it's dh. He wants me to have the celiac panel bloodwork done, but I've been gluten free for a year, except for the short challenge I did a couple of weeks ago. I made myself so sick and broke out in blisters within 3 days, so I was sure my skin biopsy would show dh. I'm still breaking out and itching. I'm so sick of people thinking I'm a hypochondriac. I've had all the classic symptoms of celiac since I was at least 21, and never was really healthy even before that. I've been told by different doctors that I had IBS, depression, anxiety, ulcers, colitis, spastic colon, acid reflux, eczema, dermatitis, rosacea, lupus, rheumatoid arthritis....I could go on and on, it's just ridiculous. Every doctor had a different opinion. My teeth have weak enamel even though I've always taken great care of them and used prescription toothpaste. I have celiac, dernit!!! Why can't the medical community figure that out? I feel better than I've ever felt in my life this last year being gluten free and I don't care what they say, I won't eat gluten again.

[onthemend]

My biopsy came back as non-specific inflammation, so my dermatologist won't say one way or the other if it's dh. He wants me to have the celiac panel bloodwork done, but I've been gluten free for a year, except for the short challenge I did a couple of weeks ago. I made myself so sick and broke out in blisters within 3 days, so I was sure my skin biopsy would show dh. I'm still breaking out and itching. I'm so sick of people thinking I'm a hypochondriac. I've had all the classic symptoms of celiac since I was at least 21, and never was really healthy even before that. I've been told by different doctors that I had IBS, depression, anxiety, ulcers, colitis, spastic colon, acid reflux, eczema, dermatitis, rosacea, lupus, rheumatoid arthritis....I could go on and on, it's just ridiculous. Every doctor had a different opinion. My teeth have weak enamel even though I've always taken great care of them and used prescription toothpaste. I have celiac, dernit!!! Why can't the medical community figure that out? I feel better than I've ever felt in my life this last year being gluten free and I don't care what they say, I won't eat gluten again.

If you have been gluten free for a year, your colon biopsy and blood panel will likely be negative. When you have a skin biopsy, the physician needs to specifically ask for it to be tested for DH. What they are look for is an over abundance of eosinophils( a type of white cell that will be present on your skin, that usually is there is LIMITED numbers. How many DH patients does you dermatologist treat? You may need another opinion.

When I stay gluten free, my skin is ok. I will be 60 next month...was dx 8 years ago.

[Guest Chrisbee]

I'm 42 and my skin was completely clear from blisters, redness and acne for the first time I can remember, until I did the gluten challenge. I didn't actually do it intentionally, at first. I tried the new gluten free oats, got sick to my stomach and broke out in blisters. Since I was already broke out, I ate some wheat products for about three days to make sure I'd have the blisters when I went to see the dermatologist. He said he had diagnosed several people with dh, so I thought he was at least a little knowledgable. He did say that he thought it looked like dh. I go back to see him next Wednesday but I feel like we've come to a dead end, unless he'll do another biopsy. I have all kinds of blisters on my chest right now, but he didn't want to biopsy them because he said they could frequently be acne and the skin there doesn't heal as well, so he took the biopsies from my abdomen, where I had only about 20 blisters. I have a feeling the bloodwork will be negative as well. My daughter's and my son's panels were both negative, although my daughter went on to have a positive intestinal biopsy.

[Guest Chrisbee]

I got the printout today of my skin biopsy results:

Biopsy 1:

Microscopic Description: In deeper more than in original sections there are zones of epidermal hyperplasia with intraepidermal mostly suprabasal acantholysis, diskeratotic cells at all levels of the epidermis, and parakeratosis. The dermis has a few eosinophils, and there are scattered intravascular neutrophils. PAS stain(with appropriate positive control) does not demonstrate spore or hyphal forms.

Diagnosis: FOCAL ACANTHOLYSIS AND DISKERATOSIS

Note: These changes are not specific. I favor Grover's disease, but I cannot exclude other causes of focal acantholytic dyskeratosis, including Darier's disease and benign acanthoma/keratosis. On occasion, this finding can be a nonspecific histologic reaction pattern. There is no evidence of dermatitis herpetiformis or other primary immunobullous disease in these sections.

Biopsy 2:

Microscopic Description: Direct immunoflourescent studies were performed and controls reacted appropriately. The following results were obtained:

IgG Negative

IgA Negative

IgM Negative

C-3 Negative

C5b-9 Negative

Fibrinogen Negative

Diagnosis: NEGATIVE DIRECT IMMUNOFLOURESCENT STUDY

So, I guess it wasn't dh after all, but it sure is itchy, and it keeps spreading. I didn't have it all during the time I was gluten free until I messed up with the oats, and since I was already broke out, I ate some wheat products too, hoping that I could finally get a diagnosis. My dermatologist told me today that he thought I was gluten sensitive, due to my history. He said that my skin problems weren't supposed to be related to gluten, but if I thought the diet was helping, then to stay on it.