Biopsy Timing: Need More Weeks On Gluten?

[Lyddie]

My 14 year-old daughter saw a GI specialist today, who did some blood tests and also scheduled an endoscopy for Monday, in 4 days. My daughter was gluten-free for a couple of weeks in early March, with a lot of improvement, and then has been back on for the past 4 days.

Prior to our March experiment with her being gluten-free, she avoided bread, pasta, cereal, pizza, crackers etc. for a few months. She never really decided to avoid starches, she just intuitively and naturally avoided whatever caused her stomach pain. She has been living on oatmeal (I know oats can be a problem now), yogurt, apples, meat...not much gluten for awhile but she must have been having some small amount because of her symptoms.

The past 5 days, she has tried to eat the equivalent of a whole bagel each day. She isn't feeling too well. We want the test results to be as valid as possible, because once she goes gluten-free we know she would have to be back on gluten for an unbearable period of time to ever test again.

Does anyone advise a longer period of time, say another week, on this gluten regimen before testing? The pattern has been greatly reduced gluten for almost a year, two weeks off gluten recently, and 4 days back on this week. Or do you think she has a good chance of valid tests/biopsy?

I hate to extend this time on gluten, but if it helps with testing, it would be wortyh another week or two of problems now to be sure, rather than months of pain down the road.

Thank you! p.s. This daughter has type 1 diabetes so celiac is a possibility..

[lovegrov]

It's just impossible to say one way or the other. I'd say that if she had damage it's unlikely to have completely healed after just two weeks being mostly gluten-free, but there's no quarantee. For someobdy who has indeed healed, the recommendation is eating gluten for 12 weeks.

richard.

[Lyddie]

I was just talking with my daughter and want to phrase this question a little differently. For the past 6 months, she has frequently avoided gluten on many days, just because bread, pasta etc. obviously hurt her. So for many days, she might get by w/just apples, yogurt and eggs, for instance. When she did eat wheat-containing foods, which might have been every few days, she definitely got sick. But she hadn't yet identified this trigger consciously.

During these months, she did feel better when she just ate the foods listed above.

She finally figured this out and consciously tried to go gluten-free, very strictly, no malt flavoring, food starch, soy sauce etc. for 10 days straight. Each day, she felt better.

Then she went back on gluten these past 4 days and feels sick again.

Would it be better to be on gluten continuously and in a sufficient quantity (bagel/day) for moret han a week to have th biopsy? I am thinking of rescheduling the biopsy that is supposed to happen next Monday, for a couple of weeks later, if my daughter can stand it.

I feel like she only has one shot at this test and want it to be valid. But every day on gluten is a day of suffering. So it's a conflict and I would love advice.Thanks!

[KaitiUSA]

If she has been avoiding gluten she would need to be on gluten for more than a week to get a biopsy. Avoiding gluten repairs the intestines so then the results would come back negative. Have you found out the blood results yet? Was she avoiding gluten around the time she got her blood drawn?

I would see the results of the blood test before you get a biopsy. If all the tests (blood &biopsy) come back negative you may want to consider York lab testing. They test for allergies or intolerances and she may be gluten intolerant or could very well be celiac. Wait and see the results then go from there Good luck with everything and if I can help you guys out let me know.

[Lyddie]

She had her blood drawn today, so she has been eating a bagel a day for 4 days. She was gluten-free for 10 days before that, and has avoided gluten w/sporadic ingestion f it for about 6 months. The blood test was the anti-endomysial ab, and IGA. Perhaps he blood tests will also be invalid, but they are easier to redo than a biopsy!

I think I will call and reschedule the biopsy for the first Monday in April, or at least discuss it with the MD. I think that the months-long (natural, unconscious)avoidance of gluten wasn't clear to this MD somehow.

Sorry about your Graves disease...I see it was diagnosed yesterday. Or perhaps it's a relief to get a diagnosis-? My daughter has also had issues with low thryoid (T4) along w/the diabetes. Good luck and thanks.

[KaitiUSA]

The graves disease is only in beginnings stages so we are just monitoring it at this point. The symptoms are not severe and are not persistant just occasional fatigue and my blood pressure gets lower and my pulse high when I stand up. So I am not even on meds yet. My thyroid has been off for a while so they recommended I see an endocrinologist and I went yesterday. I think of it this way...it could be way worse. If I had to pick something to be associated with celiac this is better then other things.

I'm sorry to hear your daughter has diabetes. You do know that thyroid is very common with celiacs and diabetes is also linked with celiac as well.

The blood test may come back negative because of lack of gluten in the diet but see how the tests turn out. Tell us when you find out the results and maybe we can help you further Hope you get some answers

[Lyddie]

I did reschedule the biopsy for April 4th, with a heavy heart. My daughter looks all swolen and her tummy looks distended and hurts. I feel badly that she might have to go this long on gluten. I also know ther is no guarantee that the biopsy won't miss the patches of damage, if they are there. There is no way she could ever do the full gluten challenge of months, so we'll do teh best we can to get a valid test now after the 3 weeks of misery!