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QUESTION ABOUT DIAGNOSIS OF A GLUTEN-RELATED DISEASE


Kostastour

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Kostastour Newbie

Good evening.  I want your light on an issue that concerns me and bothers me a lot.  After a small amount of gluten, any food and if it contains blurred vision, dizziness, sleepiness, fatigue, bloated stomach, I feel heavy in my muscles and my movements in general, I can't think (fog brain), I can't concentrate anywhere.  , I feel mild throbbing in my lower extremities, my eyes look tired with dark circles underneath, they are dry and I open them about halfway, I am nervous, confused and constipated.  I have also experienced GERD and gastritis which I don't know if they are confused with having gluten.  The above symptoms last almost immediately from the ingestion of gluten until 3-4 hours later.  Then I see normal again and all the symptoms go away, I feel healthy and alive again.  I have tested for celiac disease, gluten allergy and some AGA IgA and IgG antibodies which show (not in all sufferers) that they have NCGS, for me they all showed negative.  Next am I in the NCGS category with no obvious antibodies or what else could be wrong with me?  Please help me because no doctor seems to know about my parts.  Thank you very much!


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Scott Adams Grand Master

Welcome to the forum!

Were you eating ~2 slices of wheat bread worth of gluten daily for 6-8 weeks before your blood tests? If not, you could end up with false-negative results. This would be the normal testing protocol for celiac disease blood tests.

trents Grand Master

There are currently no tests for NCGS. Celiac disease must first be ruled out. There are specific tests for celiac disease. And as Scott said, you need to be consuming an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks prior to celiac antibody testing and for two weeks prior to an endoscopy/biopsy in order for testing to be valid.

Kostastour Newbie

Clearly I was eating gluten normally before the test.  In case the results were not true and I have celiac disease, is not having diarrhea and stomach pain possible with the existence of celiac disease?  I'm going to get tested again soon to find out again if I actually have it or not.

trents Grand Master

You wrote: "and constipated.  I have also experienced GERD and gastritis which I don't know if they are confused with having gluten.  The above symptoms last almost immediately from the ingestion of gluten until 3-4 hours later"

It does sound like you have some GI distress related to consumption of gluten. The symptoms of celiac disease are quite varied and do not always include diarrhea and stomach pain. Assuming that every celiac should have diarrhea and stomach pain has, in many cases, prevented uninformed physicians from considering celiac disease in their patients who don't have these particular symptoms. In fact, many of those with celiac disease are "silent celiacs" who have few or no symptoms of any consequence, at least until the damage to the small bowel villi gets pretty bad.

Kostastour Newbie

Thank you so much for your clear and reasonable answers, I really appreciate it!

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