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See My Dr. Tomorrow. What Tests Should Be Done?


jackay

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jackay Enthusiast

Advice please. I see my doctor tomorrow and wonder if I should have the Celia panel of tests run.

This past summer I had a GI panel run of stool and saliva tests. A saliva test was run for Gliadin Ab, SIgA. The result was >100 U/ml with borderline 13-15 U/ml and Positive >15 U/ml. I thought these test results were from a stool sample and I just discovered it was a saliva sample. From the reading I've done I found out a saliva sample isn't accurate. (I read that a stool sample is accurate if it is positive but that a negative result could be false.)

Since August, I have tried to avoid gluten except for slipping for about four days in October. However, my doctor said nothing about hidden gluten and gluten contamination. My symptoms didn't get worse when I slipped, but I was feeling so miserable at the time that I don't think I would have noticed if they got worse. It has been just two weeks since I have tried eliminating all gluten from my diet and only two days since I have not used an old plastic cutting board, teflon cookware and washed my dishes and hands before eating.

Some days my symptoms are better but I have a long ways to go to being healthy. Still suffer from diarrhea, insomnia, anxiety, depression, headaches, muscle pain, hands falling asleep, loud pulse, mental fog, and difficulty concentrating.

Should I go insist my doctor run the Celiac panel of tests since I have tried to avoid gluten? I have paid my out of pocket medical expenses this year so with insurance it wouldn' cost me anything. If I wait and do a gluten challenge next year, which I really don't want to do, I will have to start over with my deductible and copay.


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Jean'sBrainonGluten Newbie

This is really a judgment call. The key is you - will you believe it if you don't have a lab test confirming it? Will you believe it enough to stand firm on your gluten free diet when you have started to feel better? I didn't and it caused me a LOT of problems because I wasn't precise about cross contamination and occasionally just eating something because I hadn't planned and fed myself and got too hungry in a vulnerable place.

If you aren't sure then I would suggest eating a lot of wheat for a week or as long as you can stand it and trying to get a test right before the end of the year. It's a risk because if you have celiac you will get sick as a dog but that will give you confirmation and make it likely that the blood test will give a true result.

I'm tempted to say Merry Christmas but given what I'm advising that seems cynical - you know?

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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