Sort Of Diagnosed?
Posted 30 April 2012 - 11:43 AM
After going to a holistic nutritionist to improve my overall health, we discovered that I am gluten intolerant. I went to my doctor to get tested for celiac disease. I know I am at an increased risk due to already having hashimoto's disease. I have a list of symptoms, most noteably excessive bloating and gas, floating smelling discolored stools that I can sometimes see my food in, not sleeping well, feeling hungry even after eating a meal, tired, achey, and fatigued muscles. I did the self-test for gluten intolerance and definitely reacted. I then had to load up on gluten for a few weeks before I could get my blood drawn for the medical tests.
My doctor ran the following:
sodium 139 range 135-145
potassium 4.0 range 3.5-5.0
chloride 105 range 98-107
co2, total 25 range 23-31
anion gap 9 range 5-18
glucose 83 range 65-100
clacium 9.3 range 8.5-10.5
bun 9 range 8-25
cratinine 0.78 range 0.57-1.11
bun/creat ratio 12 range 10-20
GFR >60 range >60
IGA tissue transglutaminase AB
<1.2 range <4.0
I know now that she should have run more tests instead of just this one. Anyway, when I got the results my gut feeling told me there was something more. I at least wanted to get checked for a wheat allergy or get a referal to a gastroenterologist after this. I told my doctor this and told her the reason was because I was feeling so crappy while eating all this gluten. All my symptoms came back. Plus, my stool became an obvious green color. It was slowly transitioning to a grayish greenish color already, but now it is bile green.
Anyway, my doctor's assistant got back to me today. I was going to just summarize what she said, but I decided I'll paste it here so you can see her actual words for yourself.
" I talked to Dr. xxx this morning and she said the test she ordered for celiac disease is about 80% accurate. She said the gold standard would be a tissue biopsy which she feels is not needed at this time. Considering your symptoms its pretty clear you do have celiac disease, which is the same as gluten intolerance. She recommends you cut out gluten products and you should start to feel a lot better."
I can't help but feel like I've been left hanging. I would feel better getting a definite yes/no answer about having celiac. For my family health history, and to know to what extent I need to avoid gluten. If I just have an intolerance I just won't eat it. But, if I have celiac I would be sure to avoid cross-contamination due to the possibility of getting damage done to my digestive system without any symptoms to make me aware. She won't order more tests. I just feel a little frustrated and am not sure I should even say I have celiac disease.
Could I get some input? Thoughts? Should I seek out further testing? What should I call myself- celiac or gluten intolerant?
Diagnosed with Hashimoto's in 2003
Total thyroidectomy in 2003
Diagnosed gluten intolerant with the help of a holistic nutritionist in 2012
Posted 30 April 2012 - 12:00 PM
Your doctor is unusual in realizing that the TTG test only catches celiac 80% of the time. Many doctors don't know that. It means there is still a 20% chance you're celiac and the test simply missed it. You need more blood testing at a bare minimum because sometimes people will be positive on different tests in the celiac panel.
You need to ask for:
-Total IgA. None of the IgA tests are valid if you don't make normal amounts of IgA and low IgA is a risk factor for celiac.
-It would be good if your Dr. can get the lab to do TTG IgG if your IgA is low. This is called "reflex" testing and many labs will take reflex orders.
-Deamidated gliadin IgA and IgG. This is a newer test that is somewhat more sensitive than TTG.
-Possibly anti-endomysial IgA, which is another autoimmune test for celiac. Not all labs run it any more because it's an older test that is done by hand.
Some people have all negative blood tests and are still found to have celiac on biopsy. It's hard to get your Dr. to justify a biopsy without any positive bloodwork though.
Posted 30 April 2012 - 12:57 PM
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