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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dh / Tiny Pimples With Blisters On Belly ?
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14 posts in this topic

I get this rash on my belly from time to time and I was wondering if it is DH ? It looks like what I have seen DH described like. Tiny pimples with a blistery head that burst easily and itch like crazy.

But, I only get 10 at a time at the most. All on my belly too. And I never notice them until I they start itching like crazy. I scratch my belly and can feel the liquid come out of the bump. That's how I know I have one. Sorry to be so graphic.

I've shown these to all my of docs over the years and all they ever said was "hmmm".

What do you think ? Is this DH ? If it is and I can't resist the urge to kill my doctors, will ya'll vouch for me ???

Marcia

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Marcia, it is definitely possible that those bumps are DH. You might want to get a skin biopsy next time you get those. If you are diagnosed with DH, you automatically have a firm diagnosis of celiac disease.

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Thanks Ursula,

I had discounted it as DH because everything I read about DH said that people normally get the rash on their elbow, knees and buttocks. I looked here first before asking, but didn't see anything about where all you can get DH. I could have missed it though, I get sidetracked easily.

Once a blister has popped it continues to ooze anc crust over for several days and then goes away completely about two weeks after it has popped. They itch like crazy while they are in the oozing phase. I don't get them all at one time either. It takes about 3 days for all of them to show up.

I got one a couple of days ago, but so far that's all. I've been checking daily now because I am curious.

I will definitely get it biopsied next time. Do they have to be in the oozing phase for a biopsy to be correct ?

I know it would help me stay motivated to stay gluten free if I had a medical diagnosis. That's just me.

Thanks again ... Marcia

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I get outbreaks of those blisters just as you described. I DO have dh, but my dr. wasn't convinced that these bumps were the same thing. I tend to think that they are dh. Mine are around my middle with more on the sides. I use a steroid ointment to help the itch. I've been on a gluten free diet for 2 years, but have these flare ups every so often.

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I wonder if that's what I've got right now. I got glutened this week and I have these little blistery bumps on my breasts and tummy. I also get them on my arms sometimes. They itch like crazy.

Ann

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Marcia, even though MOST people get DH in those usual areas doesn't mean you couldn't get them anywhere at all. I've seen pictures on the Internet of DH pretty much anywhere on your body. And those oozing blisters are pretty typical, no matter where they are. I don't know what stage the blister (or bump or pimple) should be in to do the biopsy. You will need a referral to a dermatologist for starters, and see him/her. If you don't have a rash at the time of the appointment that's okay, go anyway (here in Canada it could be months before you get to see a specialist, sometimes more than a year, so you can't time your appointment for when you KNOW you have a rash), you will likely be told to come in on short notice when you get blisters again to do the biopsy. Its just hard to get in the first time.

Take pictures of your rash now to show the dermatologist, just in case.

Pegster, I think your doctor is wrong. DH doesn't always look exactly the same.

Ann, it is possible that your rash is DH. It doesn't have to be, but could very well be. I get those itchy rashes, and should follow my own advice and go to a dermatologist to have a skin biopsy done myself. At least if it comes up positive for DH I'd have a firm diagnosis as well.

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Thanks again Ursula,

I will definitely go to my dermatologist next time and ask him to biopsy it. Only, this time I will know to ask him to check for DH. I have been wondering what this was forever.

It would be great to have a firm medical diagnosis.

Marcia

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I would almost bet It's DH, I had the same thing, closer to the belt line, but oh yeah itchy, itchy it was!

I wondered the same thing, weather it was DH or not because I read, elbows, knees & buttock mostly

but I had the skin biospy, and it was confirmed.

I'm just recently diagnosed with celiac, but years of itching, and pain, been on a gluten-free diet for about 2 months, and feel alot better, little flare ups now and then but nothing like before

take care

Allen

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I would almost bet It's DH, I had the same thing, closer to the belt line, but oh yeah itchy, itchy it was!

I wondered the same thing, weather it was DH or not because I read, elbows, knees & buttock mostly

but I had the skin biospy, and it was confirmed.

I'm just recently diagnosed with celiac, but years of itching, and pain, been on a gluten-free diet for about 2 months, and feel alot better, little flare ups now and then but nothing like before

take care

Allen

I have "semi-dx'd" DH. It looks like a DH rash. It responds to Dapsone. Neg. Bloodwork (3 months mostly gluten-free at time of test), biopsy done (possibly wrong site) and results will be available on Thurs.

Ordered Enterolab test last night.

I have the "DH" rash EVERYWHERE except face, scalp, and bottom of feet. My Dr. (allergist who says he has seen it many times before) says it can be anywhere on body and can cover most of your body at one time. The elbows, buttocks, sacrum must be urban legend!

I glutened on a trip and got rash very very badly (so bad in fact I thought I'd end up in a mental ward). Dapsone didn't even really help. Stopped Dapsone - it got even WORSE. Started Dapsone yesterday again, now abating SOME.

And also, the DH rash can be a different type of rash depending on the type of skin that it's on. The easy-to-break oozing blisters are what I get on forearms and legs and upper back. On my underarms, lower back and (shhh!) crotch, are harder white bumps that itch like crazy but don't scratch off as easily. Scratching those areas causes either bruising or dark pigmentation of skin around bumps (UGLY!) When that rash first happened I was sure it was NOT DH - but Dr. said it still could be (the different type of skin issue).

Between the Biopsy and the Enterolab fecal test, I HOPE HOPE I can find out what this awful rash I've had for more than 3 years is! And I really do hope it is Celiac in a way! The "cure" is non-medical and fully within one's own control. And it's ONLY FOOD, right? (But I'm having hard time of it so far too).

And a lot of my history points to Celiac!

French Canadian

Lifetime of Constipation

Reflux caused by "bread/Flour" products started 1981 continued until I went gluten-free in Dec! Now very little GERD

Gall Bladder removed (stones) 1984 (right after 2nd pregnancy)

Major gas/bloat/stomach problems led to dx of IBS and increase by about 1000% of Wh. Wheat BREAD (to get fiber) - that helped constipation, caused almost diahrea (learned about Imodium!) but started with the awful rash almost immediately. So I made it worse - No gas, lots of diarhea, lots :huh: of rash!

Sound like Celiac?

It does to me!

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I feel lucky that I was diagnosed with DH because my not-so-severe GI symptoms had been ignored or blamed on food poisoning for years and years. My blood work was moderately high, but I think I would have had to be desperately ill before anyone would have caught the Celiac. I recommend a biopsy for anyone with the slightest suspicion of DH! It's good to know for sure.

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Anyone heard of DH *not* itching? I get blistery flat spots whenever I get glutened, and they are often symetrical (in same place on either side of my body). They usually appear on my upper chest and on my midrift. I did have them on my inner arms once too. I usually only get 2 - 3 'pairs' at a time, but they ONLY come after a glutening and fade afterwards. They reappear (same place or new places) if I get more gluten. They also show up for casein and yeast (which I have tested IgA positive for an intolerance to). But they are not itchy at all.

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Cornbread, those sound like hives.........even though when I get hives, they usually are itchy. But you can get hives from all kinds of different intolerances, I do.

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The rash you described, Franceen, is just like what I had for a long time, off and on for as long as I can remember, but much, much worse in the past ten years or so. It is so itchy that it drives you nuts to take a shower or bath or work up a sweat doing outdoor work. I got it all over. I started gluten-free in Jan. and little by little the rash disappeared. It like moved up my body, and finally stopped. I know almost immediately when I've been glutened because I get the little blister ones on my face that itch and hurt at the same time. I also get them from dairy. Did anyone here get them inside the mouth? I get them inside the mouth and on my tongue. I've never been officially dx'd with DH, but I really don't think I need to since gluten-free makes it stop. I have had a dermatologist give me prednisone and steroid creme, but they never did a biopsy, since this was before I suspected gluten. Hope you all get to the bottom of it and get relief soon. I know how MISERABLE that rash can be. Especially when you want to sleep. :blink:

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Well, I've had my hands full with medical problems the past few days.

Dr. told me to increase my Dapsone to 200 Mg. because the rash was worsening (although different). Last time I did that I got a horrific and DIFFERENT type of rash (hive-like) in places that I had not gotten rash before.

My 2 skin biopsies came back negative for IgA but showed large amount of eonsiphils (allergy reaction).

That led Dr. to do some bigtime bloodwork. (I had Hepatitis A and C 34 and 33 years ago).

My eonisophils were out the roof, and my liver enzymes were also out the roof (3 years ago they were all normal BEFORE this rash). Also have the anemia from Dapsone ("not significant") and awaiting the Thyroid tests.

So they are sending me to a Gastro. next week. Same one I saw 4 years ago that wanted to put me on Interferon treatment and do a biopsy. I did neither and blookwork was normal 1 year later and until now, every year since.

And also believe that I am having a Dapsone Hypersensitivity Syndrom problem. That can be fatal, so I've stopped the Dapsone completely. They told me to stay Gluten Free because the underlying issue could still be DH/Celiac.

(I have not had alcohol since I was 20 and first hepatitis illness, I quit smoking 13 years ago. I don't do pleasure drugs. And I used to eat pretty well. Now, I don't eat very much because gluten-free leaves little I like (except chocolate and steak - and chocolate is GONE TOO). But I'm losing weight (could loose 20 lbs and be good)

I just received the Enterolab Fecal test for IgA, etc.

That should finalize if it's DH/Celiac or not.

I also have York Labs tests for common allergens. That will be interesting too.

Skin tests were probably masked by Allegra, Benedryl, and rash itself. But tested minimally positive for cats, chocolate, chicken, carbomer and of course, dust mites. Hmmm. Have had cats for 45 years (Dr. thinks I've desensitized to that, same with dust mites. Chicken was really a marginal result, leaving just the chocolate to avoid :(

I am really miserable, hungry, tired, itchy, ugly (have to cover my arms & legs to be socially acceptable with this rash). And I have to work too - and travel.

Just a bad day.

Hope tomorrow is better.

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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