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Hollylou42

Whats Going On With Me!?

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Heres the rundown...

May 29th stop eating gluten for 2 and a half weeks, feel a bit better but still have some bad days

June 13th- eat gluten filled meals for 8 hours to see if reaction, fine until June 15th when I had the worse D and felt more ill then I had since before going gluten-free

June 14th- Had doctors appointment, told them my mom had celiac, they drew blood and told me to see a GI and remain gluten-free until I saw him.

Today- the past week and a half has been bad again, I made quite a few mistakes, yet it is hard to tell if my D and C are gluten related. Yet I am so conviced I have celiac. I have all of the symptoms from mostly D, sometimes C, to bloating, cramping, gas, headaches, lost 15 lbs (and I am pretty little to start with!), hair loss, mucousy stools, sometimes nausea, constant fatigue, depression, pain in my upper and lower stomach) and the fact that my mom was diagnosed!

So today I got the call about my blood results.... negative!

They told me this (forgive my spelling):

My Immonoglobin A was 156

My Antibody endomyciel was negative

and my transglutaminase IgA was 1

and all that they said meant a negative test. So now they said to stay gluten-free until I see a GI, which isn't until the end of July! By then won't being gluten-free effect any test results (if in fact celiac is my problem). Does anybody know of any other digestive disorders with the same symptoms as celiac? I have done some research and I don't really fit into any other problem (since I don't have specified pain in lower left hand side or vomiting or bloody stools, it rules most things out) Could it just be food intolerences?

I am frustrated that all my problems are not what I thought they were (or so the doctor says). Any suggestions or comfort would be greatly appriciated.

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From what I have read on this forum, even the 2.5 weeks of gluten-free before your blood tests could give you a negative. If you are going to do further tests with a GI, don't go gluten-free. Blood work and biopsy will likely be negative if you do.


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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