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Sooo Confused About This Rash....


glutenmommy

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glutenmommy Rookie

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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glutenmommy Rookie

Anyone care to reply? :)

mushroom Proficient

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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    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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