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positive blood test for celiac
http://talkingallergies.allergicliving.com/viewtopic.php?f=6&t=1246
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Author:  Helen [ Thu Aug 10, 2006 4:15 pm ]
Post subject:  positive blood test for celiac

I had another appointment with the GI specialist today and got my blood test results back. I called the office long ago to ask about the test and never did hear back . . . so I kind of assumed that the test results were negative which as it turned out would have been a wrong assumption.

I had two tests done--one was positive and one was negative. So it is really unclear, and I've decided to go ahead with the biopsy + one other test (not for celiac.)

Finding over the counter meds to prepare for the test is proving to be difficult. Everything has corn. I think I'd probably be okay with a bit of corn this one time, and I do take lantihistamines with corn starch . . . but my allergist doesn't want me to consume any new product with corn unless I'm under medical supervision.

I'm not happy about the positive test result, but in a way I'm relieved not to have to make the decision about whether to go through with the biopsy or not. . . it is clearly necessary now. It will be a lot to handle if I have celiac on top of all my other allergies . . . but really it wouldn't be *that* much of an adjustment as I've been avoiding gluten for awhile (although I've added barley back in for the purposes of the test).

Author:  KarenOASG [ Thu Aug 10, 2006 4:20 pm ]
Post subject: 

Wow... hard to know what to say. On the one hand, not that much fun to have celiac (although like you said, if you've been avoiding gluten for awhile it won't be the uphill learning curve that some might have). On the other hand, I'm sure it would be good to have a proper diagnosis, and I guess you're moving closer to that.

When you say you need meds to prepare for the test, do you mean for an anaesthetic? I hope you're able to find what you need...

K.

Author:  Helen [ Thu Aug 10, 2006 4:45 pm ]
Post subject: 

Well, I'm not sure about the anaesthetic. I asked about that, and the doctor spelled out the name to me (and was looking over my shoulder as I wrote to make sure that I spelled it correctly :lol: ) But I haven't starting researching that yet.

Author:  Helen [ Mon Aug 14, 2006 12:25 am ]
Post subject: 

My *brief* period of being stoic (stoic for me anyways :lol: ) about the possibility of celiac disease and the whole medical procedure is officially over. I've realized that if I have celiac I'll probably have to check for wheat cross contamination. I'm allergic to wheat, but I have to prioritize which allergens I worry about more, and wheat is low on the list.

Another concern: this is *not* a test that anyone would want to do unless it is going to be accurate. And my gastroenterologist didn't seem to be certain about how much gluten I would need to eat so that the test will be accurate. There aren't any firm clinical guidelines.

I was advised me on another allergy site that I ought to eat gluten a couple of times every day. But until this second appointment, I wasn't really serious about taking the test so I just stuck with what the doctor said would be okay. But now I really want to know---I decided to call the Celiac Association. The person I talked to said to have the equivalent of 3 slices of bread every day for 3 weeks. Barley doesn't have nearly as much gluten in it, and she wasn't sure how much barley would equal 3 slices of bread. But she seemed to think that I'd have to eat a heck of a lot of barley.

I spent hours today trying to find medical journal articles on the subject. I finally was directed to some reliable info. not in a medical journal but through a message board for celiac--in case anyone is in the same predicament as me, here are some guidelines:
http://www.celiac.com/st_prod.html?p_prodid=12&p_catid=2&sid=91hH9H1V0HE15X9-26106308354.ce

This is helpful because this doctor indicates exactly how much wheat one needs to take (for 2 months!). . .now if only I could find out how much gluten is in barley.

My other research project: in addition to researching over the counter meds, I have to research the anaesthetics. If I hadn't asked, I think the doctor wouldn't have thought to check. I think most doctors think of drugs as being synthetically produced and they don't think of them as containing food-derived ingredients. Magnesium citrate's gonna be a problem---it contains corn-derived sorbitol. I'd probably be alright, but my allergist wants me to take it in a hospital setting rather than at home just in case.

I've discovered (see http://www.rxmed.com) that diazemuls contains soy oil and egg-derived ingredients :shock:

I have yet to research fentanyl, the other anaesthetic I'm supposed to be getting . . .

Author:  Helen [ Mon Aug 14, 2006 12:31 am ]
Post subject: 

Darn---I just noticed that the guidelines on that website I cited are for the *serological* tests rather than for the biopsy. So much for my research skills!

Author:  _Susan_ [ Mon Aug 14, 2006 6:51 am ]
Post subject: 

Try this link:
http://www.webmd.com/hw/digestive_problems/hw192425.asp

Scroll dowm to the bottom and click on A-Z Drugs to find details on prescriptions.
:)

Author:  Nicole [ Mon Aug 14, 2006 9:11 pm ]
Post subject: 

Helen, just wanted to say good luck with all your tests. Hope you get some answers. :)

Author:  Helen [ Tue Aug 15, 2006 10:45 pm ]
Post subject: 

Thanks, Susan and Nicole!

Hmmm...I looked up that link you provided, Susan. Looks like I will need more definite info. from my doctor. . there are lots of different types of fentanyl.

Author:  Helen [ Mon Sep 11, 2006 6:25 pm ]
Post subject: 

update on the celiac disease situation:
My GI doctor recommended cancelling the biopsy for a couple of reasons (one being that I'm not going to trust the results if negative).

I'm going gluten free in any case, but I asked my GI doc to repeat the blood tests to see if anything changed after the whole barley experiment.

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