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How Do You Know If You Are Super Sensitive?


mtdewpeg

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mtdewpeg Rookie

How do you know if you are a super sensitive celiac or super sensitive to gluten? I can eat almost anything and not feel sick. I went to the GI because of the diarehha,weight lost, iron anemia. HE DID a endoscopy and the biopsy said most likely celiac. i had a celiac panel and other celiac related blood test done after being gluten free for a couple weeks. it came back saying i have celiac sprue. after the biopsy i was thinking it was something else, but since the celiac panel and other test were positive for celiac i am actually a little releived. I KNOW THIS IS LIFE CHANGING. I will try my best to stay gluten free and pray for the best.

I do have like eczema or some type of rash all over my legs and some on my arms. i was wondering if this could be related?


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GFreeMO Proficient

You react to things that don't usually make the average celiac sick. Some of us, myself included get really sick from anything processed and labeled gluten free.

Your rash is probably related. I get something similar when glutened. It could be DH as well.

mushroom Proficient

Most people would not consider themselves super sensitive until they had ben on the diet for a few months, had taken all possible precautions to avoid gluten or cross-contamination from gluten, had eliminated other possible causes for symptoms (such as additional intolerances like dairy), and were still experiencing almost constant symptoms of glutening.

kareng Grand Master

I don't think you can tell if you are Super sensitive until you have done the gluten-free diet really well for at least 6 months. It takes time to heal & get in the "groove". And to make sure its not milk or something else prolonging the GI issues.

You need to get the basics down before you can tell if you need to delve further and to lower levels of gluten than the majority of Celiacs.

IrishHeart Veteran

I do have like eczema or some type of rash all over my legs and some on my arms. i was wondering if this could be related?

In answer to your other question, it is possible that yes, your rashes are related to celiac.

Many of us have had rashes and sores clear up since going gluten free. It takes time for you to see symptoms improve, so try to be patient. :)

If you have DH, eczema or psoriasis, those are diagnosed and often treated with medications, along with the gluten-free diet.

Best wishes!

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      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.
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      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
      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  
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      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. 
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