All Of These Tests...

[KathiSharpe]

So I have a question. Actually, three. Or four. Or six.

#1 - if my new doc is unwilling to dx me on the spot and wants to send me for tests, what specifically do I need to ask for (to make sure she actually runs all the right tests!)

#2 - I see the big ads to either side of the forum Is the genetic testing worth doing? And I think there was an ad or discussion on stool sampling resulting in diagnosis when blood and even biopsy failed?? These all seem to be done through private labs. Are the same tests done by conventional labs with doc's orders? Will insurance cover this sort of testing?

#3 - I keep seeing people talk about iGa and iGg (hope I got the right letters capitalized?) and how if your body doesn't make these, or make enough of them, the blood test can be a false negative.

I googled it and came across something confusing about the relationship between these (antibodies??) and the immune system and that people who are low in these also have difficulty fighting infection - ranging from serious illnesses to just catching bugs that go around - and this inability to fight off infection includes difficulty in mounting a fever.

That'd be me, folks - I catch every little bug that goes around and I don't run a fever above 99.1 even with a raging strep throat. Normal body temp ranges between 96.6 and 97.0. Very hard to convince a doc that you have a fever at 98.6!

So is what I'm reading correct? Or am I extrapolating too much out of too little? (and if that is right, does eating gluten-free resolve the immune problems?)

If so, it seems likely that this may be a part of my problem - and would answer why the blood tests were negative a couple years ago.

[Mother of Jibril]

Some quick answers to your questions...

#1 - if my new doc is unwilling to dx me on the spot and wants to send me for tests, what specifically do I need to ask for (to make sure she actually runs all the right tests!)

Nobody can diagnose you with celiac disease "on the spot." The blood tests should include:

- Antigliaden IgA

- Antigliaden IgG

- Tissue transglutaminase IgA

- Tissue transglutaminase IgG

- Endomysial antibodies (EMA)

- Total IgA

#2 - I see the big ads to either side of the forum Is the genetic testing worth doing? And I think there was an ad or discussion on stool sampling resulting in diagnosis when blood and even biopsy failed?? These all seem to be done through private labs. Are the same tests done by conventional labs with doc's orders? Will insurance cover this sort of testing?

Personally (unless you have tons of money to throw around) I would go one step at a time. Start with the blood test.

#3 - I keep seeing people talk about iGa and iGg (hope I got the right letters capitalized?) and how if your body doesn't make these, or make enough of them, the blood test can be a false negative.

I googled it and came across something confusing about the relationship between these (antibodies??) and the immune system and that people who are low in these also have difficulty fighting infection - ranging from serious illnesses to just catching bugs that go around - and this inability to fight off infection includes difficulty in mounting a fever.

Yes, but it's usually not a big problem. There are people on this board who are IgA deficient.

That'd be me, folks - I catch every little bug that goes around and I don't run a fever above 99.1 even with a raging strep throat. Normal body temp ranges between 96.6 and 97.0. Very hard to convince a doc that you have a fever at 98.6!

Have you ever had your thyroid checked? That's a common cause of low body temperature.

(and if that is right, does eating gluten-free resolve the immune problems?)

A gluten-free diet might help a lot, but it's not a cure for everything. Celiac disease is the only autoimmune disorder with a known "cure" (stop eating gluten and your immune system stops attacking your intestines).

[Amyleigh0007]

I can help you with question #2! I had gene testing done as a last resort. My blood test was negative and I have been gluten free for over a year so biopsy was out of the question. There was no way I was going to eat gluten for 3 months to have one. So, as a way to gain more information about my health, I did gene testing through Enterolab. You do not need a doctor's order. I did not bother to turn it into my insurance because I knew they wouldn't cover it. I was $174. I learned ALOT! Not only about me but about my daughter and my parents. MOJ is right. Gene testing should be done after everything else.