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Should I get retested?

mcez
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mcez Newbie
mcez
Posted
(edited)

I was tested for celiac in February because of extreme stomach issues that had been going on for a couple of months. My doctor had previously told me to go gluten free because I noticed symptoms after ingesting gluten, and I had the blood test after being gluten free for at least a week. It came back negative, but I decided to stay mostly gluten free. I was also diagnosed with a Vitamin D deficiency, which I know can be a symptom of celiac. I'm a college student on a meal plan at a school that is not accommodating to dietary restrictions so it was hard to do it 100% but I made my best effort. I did notice that I felt better the longer and stricter I was gluten free. Last weekend, I had a couple of bites of a chocolate chip cookie because I was at a restaurant with my family, and within 10 minutes I thought I was going to throw up and was in extreme pain for about 24 hours afterwards. Along with the lasting pain and nausea, I found it really hard to focus on anything for a couple days and felt more tired than usual. At this point I'm wondering if I should be retested because of the extreme reaction that I had to only a few bites of something that contained gluten. 

Edited by mcez
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Ennis-TX Grand Master
Ennis-TX
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Did they do the full blood panel? Do you have copies of the test so someone here can help you interpret the results?(many doctors are not celiac savy). Did they do the endoscope and biopsy?

The test requires eating gluten for 12 weeks for the blood test, and 2 weeks for the endoscope and biopsy. Some people do not show up on the blood test, and with the intestines having the surface area of a tennis court they can miss it with patchy damage. There is also the chance you could just be Non Celiac Gluten Sensitive. Read up on testing here.

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mcez Newbie
mcez
Posted
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6 hours ago, Ennis_TX said:

Did they do the full blood panel? Do you have copies of the test so someone here can help you interpret the results?(many doctors are not celiac savy). Did they do the endoscope and biopsy?

The test requires eating gluten for 12 weeks for the blood test, and 2 weeks for the endoscope and biopsy. Some people do not show up on the blood test, and with the intestines having the surface area of a tennis court they can miss it with patchy damage. There is also the chance you could just be Non Celiac Gluten Sensitive. Read up on testing here.

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They did a celiac panel, I’m not sure exactly what that entails. My doctor did not give me the actual results, she just told me that it was negative. I also did not have the endoscope and biopsy

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