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Help! Symptoms for years, Dr. not running correct tests!

Midwestmama3G
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Midwestmama3G Newbie
Midwestmama3G
Posted

Hi all! 
32 yo female :)I have had symptoms of celiac for some time. Year maybe… the last year it’s gotten worse. Chronic and constant  diarrhea, nausea, bloating, mouth ulcers, muscle twitching, fatigue, headaches, tingle patches, weight loss. I’ve been tested for everything under the sun. My doctor ran an IgE test only and told me the level was 11, which is low, and I don’t have celiac. I sent him an email and asked him to run the full celiac panel, becauee I thought IGE only tested allergies and celiac is an auto immune condition. I haven’t heard anything back yet. I’m frustrated because I feel terrible all the time and I don’t have answers. Can anyone help give me advice ? Should I just try a gluten-free diet and see if I feel better? Thank you!!! 

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trents Grand Master
trents
Posted

You are correct. IGE is for allergies. An entirely different immune system pathway.

Here is a description of tests that can be run for celiac disease and their strong and weak points: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

If you don't get any cooperation from your doctor soon, I advise getting another one. Also, you can order home celiac test kits for around $100.00 from Imaware. There are other ones available too: https://www.testing.com/celiac-test/at-home/

One option, as you suggest, would be to try a gluten free diet and see if the symptoms improve. But only do that if you are for certain you will not pursue anymore testing. You must be eating regular amounts of gluten for 6-8 weeks before the antibody test and at least 2 weeks before the endoscopy/biopsy or it will likely invalidate the tests. They are designed to detect antibodies from inflammation/damage to the small bowel lining and if you allow it to heal there won't be antibodies to measure.

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