Gluten Intollerance vs. Celiac Disease

[discodiver]

   Hi,
I'm new here and happy I found this site.  I have been struggling with this crazy Gluten issue for what seems like my whole life.  I have been tested 3 times by my GI doctor and each time the test results come back negative for Celiacs Disease.  I keep telling her that I am unable to eat bread or breakfast cereal and she insists it's all in my head.  Don't get me wrong...this lady literally saved my life 6 years ago so I do trust her but I can deny what happens to me after consuming gluten.

Here is where I hope someone can help me.  Yesterday I actually felt great for the first time in months and my diet is typically 90% gluten free....I eat an Oat bran breakfast cereal that has "Wheat Starch" in it.  That is until today.  For lunch yesterday I thought I would eat a hamburger from a restaurant to see what would happen.  The worst decision in my life.

About 2 hours later I was crawling out of my skin.  The best I can descibe it is a combination of rage, extreme anxiety and extreme depression all rolled into one.  Could not sleep at all last night but the few minutes I was able to sleep I had the strangest dreams/nightmares.  My chest is pounding, seeing spots in my vision, sweating and both hands and feet sting/tingle.  If my tests are negative for Celiacs Disease what in the world is wrong with me?  Could "Gluten Intollerance" be causing me to feel this badly? 





 

[the sensible celiac]

You mentioned that you were tested for celiac disease, but there are various types of tests that can fail with a false negative under different circumstances.

The gold standard test for celiac disease is a biopsy of small intestine tissue obtained by an endoscopy.  This test looks for the flattened or missing villi that are caused by the immune system reaction to the troublesome proteins.  It is the test least likely to return inaccurate results.  If you have not had this test it is the best avenue to pursue.

The other common test is to examine a blood sample for the signs that your immune system has been reacting to gluten.  This test is less reliable and if the patient has not been eating gluten it will usually return a false negative.

Try to get a referral to a different GI specialist, or ask your doctor about a biopsy of your villi.

The symptoms you describe are certainly consistent with the possibility of celiac disease.

Good luck!

[Sharon]

I still think the best book that outlines symptoms, diagnosis, testing, celiac disease, gluten intolerance, etc., etc., etc., is Stephen Wangen's Healthier Without Wheat.  It's very straightforward, an easy enough read, informative.  His website www.ibstreatmentcenter.com has tons of info and links to a zillion resources.  He's a naturopath initially diagnosed with IBS, later with Celiac Disease and appears to know what he's talking about.

Good luck.

[chrizsmith]

have you tried getting another opinion from another doctor?  it is not wrong if you ask for another opinion from another expert..

and if you really feel that every time you consume gluten something bad happened to you then you should stop eating one, it wont harm you if you stop consuming it ..