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Just Saw The Nurse Practitioner...

beachbirdie

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beachbirdie Contributor
beachbirdie
Posted

It's time for me to get serious about gluten free living.

She was great actually. I resisted seeing her because she is new to my doctor's office, and my doc is an excellent and intuitive integrative medicine doctor with whom I've built great trust. She really thinks "outside the box".

Turns out the FNP also has celiac, and is very knowledgeable. I will trust what she tells me!

I had only one positive test, the TtG IgG, and she was willing to send for biopsy if I wanted but said (as is well known here) biopsies miss a lot. She suggests that I am likely in the early stages of damage, and though a biopsy may not show anything, and my skin rash is not yet widespread, she would say I AM gluten intolerant and it doesn't make sense to keep eating it just to make myself really sick.

When I got home and looked at the diagnosis sheet, she had written gluten enteropathy. Not sure how I feel about having that defined in the record, but I am glad I have something concrete that I can point to and help my husband understand that I am NOT tilting at windmills, something real is going on.

They are going to re-test only the TtG IgG in a year, and see if it has dropped. Good enough for me.

I'm not happy to have another disease, but maybe I've had it all along and could have avoided thyroid issues if I'd known. I am sure glad that I can get off the gluten now for good. It's been an uncomfortable 6 months.

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pricklypear1971 Community Regular
pricklypear1971
Posted

Excellent!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I think it might be good to have the gluten enteropathy in your record? If you need RXs in the future, they'll know to be careful in what they prescribe, and if you are ever hospitalized it's official for food restrictions.

I'm glad you've got got good medical care people to go to. I don't have that here, and I think it's really important?

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      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.
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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.
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      Test interpretations

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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. 
    • trents
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      By trents · Posted

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