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tired47

? About Diagnosis And Where Do I Go From Here

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Hello all,

I love to read the posts, hoping I will gain some knowledge to help me deal with all this "stuff". I have been doing the gluten free diet for about 3 weeks, no noticeable improvement. I had blood work for celiac and crohn's - negative. Had biospy this week- negative. Had the ??"celiac gene test"??? ( not sure if right wording), still awaiting results. If all these are negative could I still have celiac. In an earlier post I wrote the old GI dr. found missing, flattened villa, erosions thru out small bowel and dismissed it all. New GI dr. seems more aggressive and thinks I definitely have a problem. My symptoms are extreme fatigue, nausea, diarrhea, light stools, weight loss of 35lb in one year , now depresssion, and drop in all vitamin levels even when taking lots of supplements. If all tests come back normal does anyone have any idea what I should ask for next??? I am thrilled for negative results but need some diagnosis so I can start treatment and get my life back. I am still gluten free and will continue to see if there is any change. Has anyone used a nutritionist to help with this problem and did you have good luck. I had one who was highly recommended. Thanks for any info... always appreciated.

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It sounds like you could almost definately have celiac

When given a biopsy to look for Celiac disease, they look for damaged villi. You have had a biopsy showing flattened villi. That is the "gold standard" of diagnosing celiac. Can you get your old biopsy report to your new GI. It would seem like that would be enough. Blood tests can definately be a false negative. A gene test could help, but if you do not have the main celiac genes DQ2 or DQ8 that does NOT mean you can't have it. A friend of mine on here has diagnosed Celiac with biopsies and blood tests and has DQ1,5 and neither of the celiac genes.

If you are showing no improvement, realize it does take some people longer. Three weeks is just not long enough. Also check EVERYWHERE for gluten. Casein(milk protein) should also be removed since it is slows healing. Lots of gluten intolerant people are also casein intolerant. Other people also have problems with soy. I went of dairy, but soy seems okay. Too much added sugar is bad for me too. Lots of people recommend eating only whole foods- easy to digest meats, veggies, fruits, whole non gluten grains like rice.

Good luck


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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Yes, I agree with the above poster. I actually got worse after going Gluten-free Casein-free, although there were signs of improvment they were temporary. It has taken a long time, but I am now sure of the diagnosis.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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