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Audchild

Testing - Do I Understand This Correctly

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My daughter (8 years old) has been complaining of stomach pain for about a month. She's always had acid reflux and constipation and always complained of stomach pain but it's been especially bad for the past month. In fact, two weeks ago we ended up in the hospital as a result of the pain. The doctor noted that she suspects celiac's disease but no blood tests or endoscopies were done.

My husband and I are desperate. We spent the weekend reading everything we could get our hands on about the disease and talking to several people that have it. We are committed to going gluten-free for a month or two and began yesterday. I just ordered some food off the internet and will spend this evening sorting through our cupboards for "safe" foods. This will be her second day without gluten.

Meanwhile the doctor called and wants us to see a gastroenterologist. The doctor can't see us until the end of November. Having worked with this particular medical system before, I know we'll have the consult (end of November), then the tests and endoscopy (probably another two weeks out).

After reading the message boards, I think we have three options:

1. I can wait for the blood tests and endoscopies. The tests have a fairly high rate of inaccuracies (one poster said 20%). While we wait, she'll need to continue to eat gluten so we have the best chance of the tests being accurate. Meanwhile, if she DOES have celiac's, I'm essentially poisoning her stystem for 6 weeks to wait for the results.

2. We can go cold turkey now. If she does have Celiac's, we might start to see a difference in a week or two. Later, after she has been off gluten for awhile, we can introduce small amounts of gluten into her diet to see how she reacts (elimination/challenge diet). However, though starting the gluten-free diet now will help her pain, it will render "official" diagnostics (blood test, endoscopy) inaccurate.

3. We can take her off gluten now, then, the week before the blood tests and endoscopy, feed her lots of gluten. This will give the tests a better liklihood of being accurate but will again flood her system with poisons and make it that much longer to clear.

Do I have that correct? Am I missing something?

Feeling overwhelmed,

Audrey

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3. We can take her off gluten now, then, the week before the blood tests and endoscopy, feed her lots of gluten. This will give the tests a better liklihood of being accurate but will again flood her system with poisons and make it that much longer to clear.

This is incorrect. It is likely to just make her very sick if she is celiac or gluten intolerant. She would need to be eating a lot of gluten for at least three months or more and then the tests can still be false negative.


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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I think you've missed an option in your list. Your GP who suspects celiac should be able to order a celiac panel right away, so that you can take your daughter off gluten sooner and avoid another hospital visit. Having her wait six weeks for a GI to do a very standard blood panel is irresponsible on this doctor's part and you need to push a little harder. The blood tests should have been done at the hospital, as celiac testing is very standard and I'm sure they drew blood for other things.

I would be inclined to keep her on gluten, make a follow-up appointment with her regular GP as soon as is possible, and not leave the office without the blood draw. ;) The blood tests she needs are total IgA, anti-gliadin IgA, anti-TTG IgA, and ideally the new anti-deamidated gliadin peptide (DGP) IgG test. If the DGP is not available, she should have anti-endomysial IgA. The results can be transferred to the GI doctor.

Getting a firm diagnosis for kids is important because the doctors note can help with school parties, field trips, and in other situations where she would need to bring food. It will also help when she is a teenager and inclined to challenge things.

Taking her off gluten between the blood tests and endoscopy does miss the chance of catching villous damage, but at least you can get blood tests that won't leave you wondering about whether you threw off the results by taking her off gluten. Once you get the results from the celiac panel, you can think about the next move.

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