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I've had this back-up plan in my head for the longest time - at least 8 or 10 months - that if I didn't feel like we were getting anywhere with the docs we've been seeing I would take my son (age 7) to Chicago to see Dr. Guandalini. Actually the plan originally was Dr. Fassano in Maryland, but I called there and they recommended Dr. Guandalini and he is much closer. Sooooo.... I made the appt months ago even though they could have gotten me in within a few weeks. But I wanted to wait until we had seen our GI another time and see what he would say. His plan for my chronically iron deficient anemic child with elevated ttg but negative biopsy and no obvious negative reaction to gluten is to wait it out and see if things get really bad, and in the mean time supplement massive amounts of iron to keep him not anemic. I'm not crazy about that plan. I'd really like an answer one way or the other. If he clearly felt better off gluten I would have no problem saying he needs to be gluten-free, but that's not the case.

Now the appt is this week. Bags are packed, plans made, train tickets purchased, etc. I have a few days now just to wait and really figure out what I want to know. The obvious piece is the "is my kid's anemia caused by gluten?" I also have questions about the risk factor for my daughter, who has multiple food intolerances (but not gluten yet) and a genetic disorder that brings an increased risk of celiac disease. If you add a brother with possible emerging celiac disease does that bring your risk factor up high enough to justify going gluten-free pre-emptively?

Anyhow, just cyber-waiting and looking for company. And maybe ideas for things I should discuss or ask that I haven't thought of. Hoping for an answer of some sort by Thursday.

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gluten can affect the body and not cause obvious digestive issues. Blood work can also come back negative.

When you go to your Dr.s appointment be sure to tell him about any family health issues with gluten.

It's also possible that your son has an intolerance to dairy, soy, or other lectins? They can cause villi flatening that might cause malabsorption issues as well.

http://krispin.com/lectin.html

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gluten can affect the body and not cause obvious digestive issues. Blood work can also come back negative.

When you go to your Dr.s appointment be sure to tell him about any family health issues with gluten.

It's also possible that your son has an intolerance to dairy, soy, or other lectins? They can cause villi flatening that might cause malabsorption issues as well.

http://krispin.com/lectin.html

Thanks for the thoughts. :)

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Just wanted to wish you good luck tomorrow!

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