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Sooo Confused About This Rash....
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3 posts in this topic

This fall I had all the testing done -- EMA (Immunoglobulin A anti-endomysium antibodies) AGA (IgA anti-gliadin antibodies) DGP (Deamidated gliadin peptide antibody) tTGA (IgA anti-tissue transglutaminase) as well as upper endoscopy. Everything came back negative. Not even a trace of positive in the bloodwork.

Every time I eat gluten (and I mean EVERY time) I break out in hives, welts, and a fiery looking rash. It is ALWAYS symmetrical -- on both sides of my stomach, both feet, behind both knees, both sides of my bum, both sides of my neck, etc. Not all of those places at the same time but always symmetrical. The rash is never blistery or weeping, but very itchy and painful.

Could this still be dh? Or is it just an eczema reaction to gluten? And either way, how can this be when all the blood results are absolutely normal?

I know I need to listen to my body and I do follow a gluten-free diet. I just wonder how one can be so darn sensitive with not a shred of medical evidence to back it up.

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Have you ever had a biopsy done of the area immediately adjacent to the rash while the rash is in its active phase? That is the way to diagnose dermatitis herpetiformis, and could determine once and for all with medical evidence whether you are celiac or gluten intolerant. If that is important to you... either way, it seems obvious you should avoid gluten.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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