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Posted 28 June 2004 - 02:35 PM

My 8 year old daughter was diagnosed with celiac about 6 months ago. We have read a lot of information on diet and also have seen a dietitian. We are trying very hard to follow a gluten-free diet and it seems that she is feeling much better. The problem is the levels in her blood are still quit high. It was initially 130 and after 3 months on "gluten-free" diet it was 115. Now 6 months after starting this diet it is 99. Our doctor told us it should be below 20 very soon after gluten is removed from the diet. We are having a very hard time trying to figure out where the gluten is coming from. I don't believe she is cheating and I feel we are missing something. We are very frustrated and feel as though we are letting her down as her parents. Any help would be appreciated. Thanks, David and Patti
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Posted 28 June 2004 - 06:44 PM

I think you should talk with the doctor, possibly without your daughter there, and see if he/she is concerned that it's not below 20 by now. Is it possible that your daughters body is just healing slowly? If she's feeling well, and the numbers are going down, I would think that is proof enough that you are doing things right and that it's going well. It's scary, for sure, but just be sure that something really is "wrong" and that it's just not "slow". You aren't failing her, no matter what. 6 months is definitley not enough time to be an expert at this, you are all still learning. Start by keeping a food diary of EVERYTHING she eats, and read the labels of those items. Is she getting crumbs from someone else's sandwich? Does she go to a daycare, could she be getting something there even if it's a crumb here or there? Again, you aren't failing her. The companies who for some reason "refuse" to clearly label their products are letting us all down!

I definitely think, though, that the best place to start is a frank conversation with the doctor about whether to be concerned or not.

I hope this helps even just a little.

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Posted 29 June 2004 - 05:19 AM

Are you fully aware of cross contamination issues? If you have any doubt, go here to look at things you should consider. Some might sound a little anal, but if her levels aren't going down, it's time to look at everything.


Do you all eat out a lot? If so, she's getting gluten at restaurants.

The only other way I can think that we could help is if you posted a pretty detailed list of what she eats. Maybe somebody would spot something.

You didn't say which test this is. Some go down more slowly than others, but I would say it definitely should be down more than this, especially in a child (they generally heal faster).

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Posted 29 June 2004 - 07:08 AM

My son (age 10) was dx 7 months ago and reliably gluten-free (he was in the hospital on tube feeds!) 6 months ago. His orginial number for tTg was 157; in about 7 weeks it was down to 130 and a few weeks ago he re-tested at 35. I think your doctor is just plain wrong about how fast it should happen, but maybe you should post and see if anyone spots anything. Gluten turns up in just the stupid-est places!!

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Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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