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Hello all,

I am new to this so please bear with me. My son's blood test came back positive for Celiac. When I talked with the Doctor she said to watch what he eats, burger no bun, watch wheat and gluten, etc.... Then she called me back and said the wanted to schedule the scope. So I called the Pedicatric GI to schedule and was yelled at for watching his diet. He has been gluten and wheat free for a week, they want me to put him back on gluten and wheat so he can have the scope. I am having a hard time with that because he is actually starting to feel better and has a smile on his face. I am at my wits end. I cannot knowingly give him something that is going to make him feel bad again. I don't know what kind of response I am looking for, just really needed to vent. Thanks for listening.

MaryJ

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Unfortunately, in order to register results on the biopsy he has to be eating gluten. Otherwise you risk getting hin healed up enough to show healthy villi, when he actually does have celiac. I know it's hard, we had to do the same thing with my son. But if you want to go ahead with the scope/diagnosis (I highly recommend this, especially with children), you have to keep feeding him gluten.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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Hello...

You didn't tell us when he is going to have his scope...if it is scheduled for the next week for example, then I guess he will not have a problem. There is an article (unfortunately I am not at home and I can't send it to you) that says that the villy needs something like 3 months to look healed in the scope. Of course that depends on the damage that is already done and on the person's ability to heal. But I really don't think that with something like 10 days of gluten-free diet your son's villy will show no damage. It is too soon to be healed. Maybe you could talk to your doc about it. To tell you the truth I had a biopsy after 5-6 months of gluten-free diet and it showed nothing. I tried to get back on gluten before the biopsy but I only could do it for one day. It was just impossible. Most of us don't depend on the scope and think that the gold standard for celiac diagnosis is the response to the diet. My doc thinks so, too.

Any way I hope your doc will tell you what is best for your son. Good luck.


Celiac September 2007

Graves disease June 2008

Candida overgrowth / started treatment November 2008

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In reality, a positive blood test and positive diet response are diagnostic, and more and more doctors would give him an official celiac disease diagnosis right there.

You are right in not wanting him to eat the food that makes him ill again. If he was my kid, I'd skip the scope. But you will have to make that decision.

If your doctor will diagnose him without the scope, go for that and forget about the rude GI pediatrician.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thank you all so much for your advice. He is 13 years old and he knows what he can and cannot eat so trying to get him to eat something that is going to hurt him is hard. He told me that I have no idea how bad he felt and he finally is feeling better. All I have been doing is crying and trying to figure out how to help him live his life so he can feel better. Could anyone tell me what I ingredients I need to look for in shampoo, toothpaste and other items so I don't give him something he shouldn't have. Is there a website that offers this information. Any help would be greatly appreciated. Thanks again to all :)

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