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Not Diagnosed - But I Think It's Gluten! Is It?

4 posts in this topic



I have been feeling sick for the last six months, but have been attributing all of my symptoms to a number of other things...


My symptoms include:


-Absolutely no energy (EVER), particularly after I eat.  After a meal I need to lie down. 

-After every meal (which almost always involved bread) I would feel light headed, almost like my head was in the clouds.

-I feel nauseous all of the time and feel the need to vomit for no reason.  This is most intense after eating and has finally resulted in only finding relief after I eat by vomiting.

- I don't have diarrhea or rashes

-A lot of trouble sleeping (tossing and turning), but have recently been diagnosed with sleep apnea

-I stopped ovulating 9 months ago and was diagnosed with polycystic ovarian syndrome - I now take a pill to help with this.

-bloating with abdominal pain and gas

-heartburn often, but only within the last 4 months

-I was having numbness in my feet and hands for a while, but haven't experienced this as much in the last 6 months

-I also have VERY thin hair (not sure if this would have anything to do with gluten though)


I was talking with a friend recently when I had to leave lunch because I felt so ill and she suggested I stop eating gluten.  So I decided to stop eating gluten just this past Monday and after only a day I felt so much better.  My energy level is like night and day compared to a week ago and I don't feel sick at all (no head in the clouds, or need to vomit).


I went to the doctors today to talk to them about this.  I heard the doctor talking to the RN in the hall about how this is just a fad and is all the rage with it being in the media so much lately.  They are sending me for blood work for a number of things they seemed to be favouring over anything gluten related.  From there they said the only way to test for gluten intolerance is to stop eating gluten and see how I feel.  They offered to send me for blood work for celiac on Monday - although I will have been off of gluten completely for 1 week by then (will this affect the outcome of the test?).


I feel like I'm not getting the proper medical advice/treatment.  Any suggestions?  Do my symptoms sound familiar to anyone?


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Hello, and welcome. 


I would accept their offer of celiac testing if I were you; ask them to do the DGP IgA and IgG as well as the tTG and total serum IgA.  Off gluten for only one week should not be long enough to affect the outcome of the testing.  I wonder what diagnosis(es) they would favor over celiac???


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Thanks for your reply!  I will definitely do this.  They think it is either a bacteria called Hpylori or diabetes... even though all of the symptoms, so far, have disappeared with going off of gluten. 


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Welcome to the board. :)


I would take them up on their offer to test for celiac disease too, but start eating gluten again this weekend and keep eating it until you are sure your testing is done. there is a chance that eating gluten-free will cause a negative celiac test but if you start eating gluten immediately, it will lessen the risk.


Another common test is the EMA Iga, but Neroli listed the main ones for you.


If your tests come back negative, the doctors are right in that there is no way to test for non-celiac gluten intolerance except to eat gluten-free, you might want to try the gluten-free diet for a least a few months and re-asses how you feel.


Good luck.


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    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
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