Is It A Mistake Help ???? Question

Sue - posted on 01/29/2010 ( 7 moms have responded )

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I was told back in Sept 2009 That my son had celiac disease and when we put him on the diet he has stop puking and feeling so much better but last thursday they scoped him and took bioposys and told me that he don't have it now ........ But so my husband and I have gave him things with bread and things that they took from him and he with 20 mins puked them up . just like before ... What should I do , I don't know if i believe this scoping ??????? Has anyone been though this before. What i read if you told you had it you have it you never grow out of it what to do pleas help

Bryton is only 13 months old and took us 9 1/2 months to get him stop puking don't want it to start all over agian..

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Daleen - posted on 12/14/2012

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Hi Sue, I have read up a lot about this and apparently when you have been on a gluten free diet your intestines will not show any disease, as soon as you start eating gluten again it will trigger it! Hope this helps .....

Wendy - posted on 02/02/2010

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When you put a child on the diet and they stop having symptoms, their bodies begin to heal. Then if they scope 6-8 weeks later, there is often no evidence of Celiac disease. The proper method for testing is to be scoped and then to go on the Gluten Free diet. My daughter has now been gluten free for two years and her last endoscopy said no Celiac. But her first one did show it. Same for her Daddy. It means that they are better now, but will always have the disease. Good luck with your little one, I hope things get better for you.

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Geralyn - posted on 01/08/2013

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Daleen is right. If he has been gluten free, then there wouldn't be any damage seen in an endoscopy. Also, if he has been gluten free, he would not test positive for celiac anymore on the blood tests. The blood tests test positive when there are antibodies present. If gluten free for a period, there would be no more antibodies for the blood test to pick up. I think you should get a new doctor. And I think you should continue keeping him gluten free. Its not just a matter of being "little" but a matter of malnutrition. No laughing matter... Affects brain development, physical development, and high risk of developing other serious diseases in the future.

Sue - posted on 02/09/2010

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Wanted To Update you all I took Bryton to the doctors and they told use test ment that he was neg for the spots that was there before when they told us he had celiac disease. And pos would told us that he didn't have celiac disease because the spots was still there .. But they wasn't there so he does have Celiac Disease and we was also told that he just going to be a puker doctor can't fig out why he still doing it he on meds for GERD that he don't think he going to out grow. And also was was told bryton going to be a little guy way he put it . His head and weight and height arn't meeting up .. But It is ok he just going to be mommy's little man :o) Well Thank you all for all your help and ideas it really did help me in asking all kinds of question when we went to the doctor. Big Hugs Sue and Bryton

Sue - posted on 02/02/2010

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Thank you so much for all your answers and support.. This is my 3 or 4 doctor and took me this long well sept to findlay find this out and now that is works i'm just so scared they are going to mess it up again .... and i been to so many doctors with him since he was born i been to lung specialist do to his ashtma and he was getting GRED he has really bad also in his lungs and to this day i was at the doctor's yesterday for the peps doc to tell me he going though it agian it getting down into his lungs . and he on breathing treatments again off and on all day.. and with the Celiac Diesease the diet is working i just don't understand it at all.... And she said his test came back neg and not sure what it all means now he did tell me that the spots down there was gone he had it and if they was still there he didn't have it ..he had a neg bioposy i go thursday to find out with my mother i'm just afaid they going to mess him up agian .. that scares me so much he been though so much already .. Thank you all you help me alot so far have a great day .. Sue

Stephanie - posted on 02/02/2010

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if he was on a gluten free diet at the time they took the biopsies, it wouldn't show up as celiac. It doesn't mean he doesn't have celiac disease, just means there are no signs of it. That means you are doing a good job on the diet. You cannot be healed from Celiac Disease. Currently the only treatment is the GF diet. I would recommend putting him back on the GF diet and see a different doctor.

[deleted account]

I am sorry that your son is unwell My son was diagnosed in December and instantly we put him on gluten free diet he has improved so much and his stomach has started to heal, even though his stomach will heal his has to remain on the diet for the rest of his life. The doctors said that his stomach would be like any other but if I start feeding him gluten his stomach would go back to the way it was. What I am trying to say is that babies heal very quickly and perhaps he is still gluten intolerant and his stomach has heal but he still cannot eat gluten and has to remain on this diet for the rest of his life.

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