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    Do you have questions about celiac disease or the gluten-free diet?

sarahjo

Finally A Great Doctor

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my doctors office asked me for advice on celiac, they have done the work and I have been raising a celiac toddler. (They just agreed with me that she has it this week) I have never been so suprised. I put my foot down and never gave up, i knew she had celiac, they tried to prove it medically, but she got sick and sicker before they could get accurate test. (She does carry the gene for celiac,) the diet is what has opened their eyes. i do think you should be tested, but my daughter is already on a feeding tube, in the 5 months she ate gluten she developed asthma, sleep apnea(possibly), iron deficieny. i know she will improve with time. I just wanted to say thank you to the doctors that do listen to their patients and not just the books.

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My kids drs. are convinced for the most part too. It's to the point that the ped GI asks me if I want any other tests run. Their pediatrician took a continued learning type of class on Celiac to help my kids. It's so great when they care. I'm also glad your doctors are listening. I've been thinking about you. How is your little girl doing?

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We are so lucky to have a great doctor, but don't get me wrong all the other specialist don't agree. but as long as out main doctor does, that is all that matters to me. katarah has already started to feel a little bit better, not a whole lot but better. I am exhausted, drained, yet at the same time relieved. you probobly never hear someone say yeah i have celiac. but after all that we have been through i am. last year they investigated me for child neglect, that is when I started the diet. I have been in the childcare business for 10 years. i never would neglect my children, i probably do the opposite, they are a little spoiled. it is so sad the things celiacs have to go through just to have people listen. i still have problems with family and friends understanding from before and now again. i would love some food ideas. don't worry about her milk allergy, i have learned to substitute. it is hard to start the diet again, and adding the milk allergy with it. but hey i have an answer.

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Guest nini

I'm glad you have a good one... I'm lucky that my daughter's pediatrician supported me as well, sometimes you have to be your childs best advocate and fight for what you know is right. I'm sorry you were investigated for neglect. At one point I was threatened with that because my daughter was failing to thrive. They assumed I wasn't feeding her. They had a hard time grasping that she just wouldn't eat (probably because eating was too painful).

keep me posted on how she does. My daughter was 3 when I put her on the diet and now at 6 she is so very very healthy! Her current Dr. is amazed at how healthy she is.

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I'm glad your doctor was willing to listen to dietary results. Some will, and it's a good thing when they do. Diagnostic tests on young children are notoriously slippery, and sometimes you just need them to be healthy, period!

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