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Help Needed, Testing Question

janmar63

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janmar63 Newbie
janmar63
Posted

I have been suffering for 7 months with a severe itching/rash issue. I saw my dermatologist beginning 6 months ago. She has not been able to figure out what my issue is. 2 months ago, I began to attempt an elimination diet based on a book I picked up. I noticed improvement after 2 weeks or so. Basically, by playing with my diet, I have come to the conclusion that I am allergic to flour or perhaps celiac. If I don't eat it, I am fine. If I eat flour, within 4 hours, I begin to itch all over my body. I went to see my family doctor today to request that he order the testing for celiac for me. He told me I have to be eating wheat for at least a few straight days for the test to have proper results. I left there determined to get myself back on a diet including wheat. I had bread with dinner and now I can not sleep from all the itching. How can I possibly eat it for several days? I am already miserable!!

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Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Welcome janmar63,   

 

Go chat with the ladies in the  Dermatitis Herpetiformis section.

 

They are very knowledgeable. 

 

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

 

 

................................................................................................................

 

Added:

 

The quick on and off skin response sounds like a wheat allergy.

 

You might want to be refered to an allergist to be tested to see if you have a wheat allergy

as this would be easier to confirm or eliminate than Dermatitis Herpetiformis testing. 

nvsmom Community Regular
nvsmom
Posted

For blood testing, you need to be consuming 1-4 gluten servings (ie. slices of bread) daily for 4-12 weeks, 2 slices of bread / day for 6 or more weeks seems pretty common. If you are already eating bread pretty steadily, you don't need to add on more time, but if you eat "gluten light" or have gone without gluten for a length of time, you should probably do this gluten challenge for a while.

 

If you have dh at the moment, you might want to see if you can get a skin biopsy (taken from beside the rash I believe). if you get a positive biopsy, it could save you some time and some discomfort if you have to keep eating it.

 

I agree with Marcus that a wheat allergy could be a factor too.

 

I hope you figure it out soon.  Best wishes.

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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

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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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