Six Months After Diagnosis And Going Gluten Free - He's Till Testing Positive For Exposure!

[bookworm2768]

Our home went completely gluten free about 5 months ago when my 9yo was diagnosed as having celiac disease. He has grown a lot since then and I thought we were doing well.

He just had bloodwork done last week and he is still testing positive for his exposure to gluten! I am so floored by this. He has been complaining about a stomach ache once in a while but since it usually coincides with wanting to get out of a chore, we haven't known if we should ignore it or not.

Anyone have this situation? What did you do? I'm thinking of making a list of everything he eats at home and calling each and every company with questions. However, from what I'm seeing online, it seems that even products marked as gluten free are giving some people with celiac disease trouble. It also seems that different people have a different reaction time to gluten i.e how long after consuming it before the symptoms show up.

Any advice would be so helpful!

[seezee]

My nephew took two years to get to normal. Are the results lower than they were?It can really just take a long time.

[bbuster]

My son was diagnosed at age 10. He had plenty of visible signs of improvement in his health after going gluten-free, but it took about 6 months for his bloodwork to go from positive to equivocal, then another 6 months to go from equivocal to negative.

Along the way I found things here and there that were not gluten-free. (He does not react, so that makes it tougher). Vitamins were one. Hershey miniatures were another - I thought the plain chocolate ones were OK, but upon calling the manufacturer learned that they blend back little bits that are trimmed off, which would include Krackle, since they make those in the same molds.

So yes, just keep checking for awhile, sometimes formulas, etc. change. And it might just take a long time for the body to fully adjust.

It's a process, and take encouragement that he is growing and improving.

[bookworm2768]

  On 6/7/2010 at 4:38 PM, seezee said:

My nephew took two years to get to normal. Are the results lower than they were?It can really just take a long time.

His numbers went from 59 to 11; 5 being within range. I just didn't expect it to take so long so thanks for your replies. I think I need to be more careful in other people's homes and in restaurants. I really don't see how any restaurant meal can not be cross contaminated. And I know that I have been trying hard to not make people go out of their way to accomodate to his diet. A friend of mind bought him candy from a bulk bin at Whole Foods last week and was proud for having checked that the ingredients did not contain gluten. I didn't have the heart to tell her about cross contamination but maybe these are issues I just need to be more blunt about.

[bookworm2768]

  On 6/7/2010 at 4:56 PM, bbuster said:

My son was diagnosed at age 10. He had plenty of visible signs of improvement in his health after going gluten-free, but it took about 6 months for his bloodwork to go from positive to equivocal, then another 6 months to go from equivocal to negative.

Along the way I found things here and there that were not gluten-free. (He does not react, so that makes it tougher). Vitamins were one. Hershey miniatures were another - I thought the plain chocolate ones were OK, but upon calling the manufacturer learned that they blend back little bits that are trimmed off, which would include Krackle, since they make those in the same molds.

So yes, just keep checking for awhile, sometimes formulas, etc. change. And it might just take a long time for the body to fully adjust.

It's a process, and take encouragement that he is growing and improving.

Thanks Bev. It really helps knowing that it took a while for others to see better numbers on the bloodwork. I was just so surprised by the results since I've been working pretty hard on keeping the house gluten free. I wonder if the issues with the hershey's miniatures also exist with the hershey's kisses. He loves those but maybe it's time for them to go.

His comment on all this : Someone needs to invent a geiger counter for gluten!

[bbuster]

  On 6/7/2010 at 6:26 PM, bookworm2768 said:

His numbers went from 59 to 11; 5 being within range.

You are obviously on the right track - that's excellent progress. Just keep at it!