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Elementary Child With Celiac - Advice Needed Ii

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We are new to posting and may be doing this incorrectly. I mentioned our elementary child with celiac.

(We have an elementary child with celiac. Even though he has been on a gluten free diet for four years, he still does not seem to be improving in weight gain, size. His stools are still loose. He had an endoscopy 8 wks ago and his intestines were inflamed and bled wherever the doctor touched them. He went on steroids for 2 months and had another endoscopy but he has not improved. All his vilia (sp?) are flat. The doctor, a pediatric enterologist, is recommending immune suppression drugs. Does anyone have advice for us?)

We heard many good suggestions about changing his diet. If we go to a very basic diet (and it works), how long before my son's stools become firm again?

Also, our doctor is having our son use sulfasalazine. Has anyone used this drug before?

Thank you.

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My son was dx with celiac at about age 10. He is now 12.5; when a gluten-free diet did not produce normal GI habits and he continued to decline, his doctors started looking for more answers and subsequently dx him with autoimmune enteropathy as well. AE, as I understand it, is his immune system mistaking his small intestine for a transplant and trying to "rejecct" it. It is a rare, "orphan" disease, and even more unusual to find in someone his age, but it happens. He was started on very large doses of prednisone, stayed on those for about 4 months, and was tapered off. This was at Children's Hospital of Pgh.

During that time, he was also started on an immune-suppressing drug called Prograf (FK506) and that stabilized him and he has continued on that dose. No one knows if he has celiac, or AE, or both. You may need a major children's hospital, not just a peds GI, to handle your son. We travel 3 hours a few times a year for his checkups, but it is worth every minute spent. A 'scope at 18 months out revealed normal villi, but some suspicions pathology characteristic of AE, so the jury's still out.

Immunesuppression is it's own hazard and uncertainty. You need physicians who have used it before and are familiar with maintenance of that kind of patient. I think you can get my off-list email from here, feel free to email me privately for more.


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