Irritable Bowel Syndrome Message Boards | Gluten free (or former) dieters?

Cindy, I am not a expert and still have lot to learn. I'm just a 62 year mother of a daughter with Down Syndrome, who has been in stomach pain for the past 5 years. We have been seeing GI doctors for 5 years and none of them indicated that my daughter had Gluten Intolerants up until this past Oct. when we were testing for allergies and the Dr. could not find anything she was allergic to that would cause her problems. He even put her on allergy medicines for 2 week thinking it would be something in the air but it made no difference. She still was in stomach pain. Then he took a blood test and called me to his office indicating that my daughter was Gluten Intolerants and that she need to see a Rheumatology, which we are still working on because of her insurance. We tired the IBS diet for 2 years and if helped her some but the pain was still there just not as bad. We had 3 biopsy and none for her GI doctors found anything. We also had 5 blood test for Celica Diease with 3 difference doctors all indicated she didn't have Celica Diease. Of the 3 test that each doctor did there was always 1 of them very high, but the doctors said that could be becasue she's down syndrome. She immune system was also low and she is always anemic, but they said that most down syndrome are anemic. Anyway we have started the Gluten Diet since Oct. and it has made a difference. She is in pain sometimes, but it usually because something she has eating has gluten. And for some reason since she has been on the gluten free diet her pains are worse now when she does eat gluten then what they were before. I think that since it was in her system all the time before it was causing her a steady problem and now that she's been off of the gluten it's worse now that its not in her system anymore. I still have a lot to learn about the Gluten Diet and I also still use the IBS diet too without Gluten. But 2 weeks after being on the Gluten diet it was like day and night. I went to pick her up a camp and for the 1st time in 5 years she didn't tell me her stomach hurt. I didn't say anything thinking that maybe this was just one day but No still till this day that I pick her up from camp she has not said her stomach hurts, unless she has eating something at camp with gluten it. We're not free yet of stomace pain but it's a lot better than it has been for 5 years and I am very greatful for the allergist that put us on the gluten free diet. After the blood test that the allergist did I sent a copy to her New GI doctor indicating that the allergist was going to put her on a gluten free diet and what did he think of the blood test. He words were he did not think there was anything in the test that would indicate she was Gluten intolerant. As for now I will keep her on the Gluten Free Diet because it has helped her a great Deal. I also like the IBS Diet Too, but right now we are ust Gluten Free and it's working. Thank God
This may not help, but I just wanted to give you my side of the story and how many years we have been working with Drs. to find something wrong with my daughter. I knew she was in pain, it was just hard for the Doctors to find out what kind of pain she was in. We really could not get a good picture from her in so many words as to were and now she was hurting, but I as her mother knew she was in pain. She is laughing a lot more now then she has been in the last 5 years.
Thanks for listening,
eva, mother of an angle that is not in so much pain now.

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