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Rash Is Gone

bratcat

By bratcat
in Dermatitis Herpetiformis

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bratcat Apprentice
bratcat
Posted
:P The rash that I had has gone away.It really healed up.From what happened I am not so sure that celiac is the only cause of HD.I had mine for 8 months before anyone was able to give me anything for it.At the time I got the rash I had just been put on some medication for restless legs,and had also been taking alot of ibuprofen.I quit taking the ibuprofen because of the bruising and bleeding it caused and I cut back on the other med.I have been plagued with this rash for over a year .I am so thankful that it is gone.I am still not totally gluten frree.When you are the only one who has celiac and have to cook for several people it is really hard to be gluten free.That is another reason I believe it was caused by something other than gluten.Anyone have any ideas on this?
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lovegrov Collaborator
lovegrov
Posted

Were you actually diagnosed with DH? If a doctor actually diagnosed you with DH, then you almost without question have it. And if you have DH, then, according to all experts and the NIH, you most definitely have or will have celiac disease. You MUST remain gluten-free.

DH is strange (just like celiac disease). Some people break out like crazy with just small amounts of gluten and others heal up when they just cut back on gluten. Some take months and months to get rid of the DH and others (including me) get rid of it immediately. My father suffered from celiac disease for 20 years (he didn't know about the celiac disease connection); it disappeared for several years; and then it came back. Then he was diagnosed with celiac disease with no symptoms other than the celiac disease.

Nobody wants to have celiac disease, but if you truly have DH, you must, must remain gluten-free. If you don't, you could end up like me. I had DH for more than 20 years and was unaware of the celiac disease connection. The celiac disease finally caught up with me and nearly killed me. 11 days in the hospital, 10 weeks off work, and about a year to really recover.

richard

bratcat Apprentice
bratcat
Posted
  • Author

Yes I was diagnosed by a doctor after many months of testing.I had the rash for 8 months before diagnosis and no one could tell me what it was.I am more convinced that the rash was ibuprofen related because I had to take two doses of it and the rash is trying to come back.Iknow I have to get to where I am totally gluten-free,but it is so hard when no one else in the family has it.and I have to fix their food too.Also where I live people look at you like you have insulted them if you don't eat like everyone else.That or they give you a wide berth when you tell them you have celiac.The first thing I get asked is "is it catching?"I don't go out anymore because to go out to eat I just have to eat salads.That is the only thing I know is safe.

Pegster Apprentice
Pegster
Posted

Anti-inflamatory drugs like Ibuprofen can worsen DH. I finally connected my outbreaks with ALEVE. After taking it for a few days, I always have a flare up, but then it goes away. I am gluten free, and I can almost always trace an outbreak to either a gluten accident or taking an anti-inflamatory.

lovegrov Collaborator
lovegrov
Posted

Iodine can also cause flareups until you've completely healed.

richard

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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

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