Went To Internist (rude/skeptical) For Testing

[averyannsmom]

Hi All,

Sorry if something similar has been posted 1000 times before. Brief History: Had fibromylagia pains since 4, diagnosed at 21, IBS mostof life, weight gain that I can't seem to shed, sleeping difficulties. Had severe preeclampsia with birth of DD and delivered her 9 weeks early at 2.5 lbs. She has had reflux, and chronic diarrhea finally diagnosed as dairy protein/soy protein intolerant and put on elecare which is helping. The D started with her after feeding her oatmeal one day. DUring pregnancy midwife suggested eliminating wheat. DD, who is only 9 months old was tested for celiac and wheat, rice, soy, egg, dairy allergy. All came back fine....but she hasn't been exposed to any of those things but rice and the oats.

So, with my history, decide to get tested. I made an appointment with an internist (newly relocated and had to find new dr). Her medical student was great and made a statement that testing is pretty good and that Celiac is not as rare as once thought and they find people with it all the time now.

Doctor made some statements prior to handing me the lab request sheet that my symptoms aren't necessarily from celiac or wheat. She also questioned the authenticity of my fibromyalgia diagnosis. I guess once I gave her the name of my rheumatologist and the major hospital her works thru she believed me.

So I questioned which tests she was having the lab run. It's the IgA for Celiac. She said any other testing (such as for Wheat intolerance) would just be experimenting and that they aren't reliable. I don't really know what to think. On the lab form she DID NOT fill in the dot that indicates (IgG, IgA, IgM), rather she hand wrote: IgA tissue transglutaminase Ab (screen celiac tiissue).

Is this correct? Are there any other test they should run, or am I getting the right tests?

Thanks for your opinions!

Kara

[CarlaB]

That's all they ran on me, but it's not right. There should be five tests run, but I don't know the names of them. Maybe someone else can post them. I know that IgG and TtG are two of the ones that are important.

Are you currently gluten-free? If so, the tests won't be accurate.

[averyannsmom]

No, I am not gluten-free. I've actually been eating more wheat/gluten than normal for the sake of getting a proper diagnosis. I wonder if it's illegal to add stuff to the lab form :-) I haven't taken it in for the test yet. :-) I know some of the books I've been reading suggest several tests, but I didn't know if that was included in the "screen celiac disease"

That's all they ran on me, but it's not right. There should be five tests run, but I don't know the names of them. Maybe someone else can post them. I know that IgG and TtG are two of the ones that are important.

Are you currently gluten-free? If so, the tests won't be accurate.

[CarlaB]

If I were having the blood taken, I would request the proper tests, but the doc needs to do that. The IgA just doesn't give you enough info. I don't know if there's any way you can ask for more tests with your doc. I asked my ob/gyn to run some blood work on me recently and told him I just wanted to be sure everything was getting better. He was happy to do it, but I have a rapport with him as he's delivered several of my children and I've been seeing him for 15 years. In fact, we moved and I still go to Indianapolis to see him yearly. It's worth it for the rapport.

[averyannsmom]

I guess I'll take the list of tests, if someone tells me what they are (or I find them on the forum), and ask the lab tech if they are testing for all of them. If he/she doesn't know or says no, I'll ask them to call the doctor up and verify. I've had enough dealings with the medical community to get around. The best thing is to say "I'm requesting these tests. Are you refusing?" If they refuse you ask them to write in your chart that you specifically asked for A B & C, and that they are refusing....and then make sure you watch them write it in your chart. The big red lawsuit flag goes up when you do this and they generally will agree to the tests. It doesn't cost them anything so why should they care!

Thanks for your help!

If I were having the blood taken, I would request the proper tests, but the doc needs to do that. The IgA just doesn't give you enough info. I don't know if there's any way you can ask for more tests with your doc. I asked my ob/gyn to run some blood work on me recently and told him I just wanted to be sure everything was getting better. He was happy to do it, but I have a rapport with him as he's delivered several of my children and I've been seeing him for 15 years. In fact, we moved and I still go to Indianapolis to see him yearly. It's worth it for the rapport.

[mle-ii]

The IgA just doesn't give you enough info.

Right, lets say the person in question is IgA difficient.

[jayhawkmom]

I have my first set of test results in my hand. I had a "Celiac Panel" done.

That included:

Total IgA

tTg IgA

Gliadin AB IgG

Gliadin AB IgA

tTg IgG

EMA

[averyannsmom]

Thank you! Thank you! Thank you!! I will take that list with me and make sure they run all of those tests!

Kara

I have my first set of test results in my hand. I had a "Celiac Panel" done.

That included:

Total IgA

tTg IgA

Gliadin AB IgG

Gliadin AB IgA

tTg IgG

EMA

[ravenwoodglass]

Thank you! Thank you! Thank you!! I will take that list with me and make sure they run all of those tests!

Kara

Also make sure they run a B12 and ferritin and folate levels.

[averyannsmom]

ok. Do those(b12, folate & ferritin) tell you if you are absorbing vitamins properly?? Or something else? I take a huge amount of B complex vitamin by order of my midwife (and I still take it for energy). Will that throw those off? If I stop taking it for a few days before the blood draw will it help the outcome of the test?

Thanks,

Kara

Also make sure they run a B12 and ferritin and folate levels.