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Refractory Celiac RCD

Tamar - Israel

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Tamar - Israel Newbie
Tamar - Israel
Posted

Hi.

    I'm Tamar from Israel. About one and a half years ago, my daughter, who is now 29 years, was confirmed to have RCD type 1. She has Down Syndrome, on the higher intellectual, functioning and independence levels, but this illness change the course of her life. She had to move back home from an semi-independent living with a group of friends with D.S., her work in the free market, hobbies, performing in a special play all over the country and enjoying as normal, full life as possible. That so I can watch her 24/7, cook all her special food and take her to all the medical procedures and followups. Being so rare, I didn't find yet an expert on the subject in Israel, wile there are many who are specialist in children's "regular" celiac. Also, despite many searches on the net, didn't have anyone responding to me in Israel having RCD.

    In addition to the obvious supplements of vitamins, minerals and protein, 4 eggs a day etc, she's been taking 9 ng. of Budeson a day during this past year and a half. This keeps her more or less in check, although many times she suffers from sudden bursts of stomach and mid-chest pains, getting tiered fast and have a lose stool. This prevents her from working, sports, traveling longer then a few hours etc. She spends most of her time at home. When the doctors tried to lower the dose, her symptoms became much more severe, so she is dependent on it for basic functioning. Despite all, she is a very positive, happy person and manages to uplift herself after each pain episode, lough, dance, sings, surf the net, write letters to friends, paint and play. 

     While deeply searching the net for any new info. about RCD, reading that it is for life with no way of healing, just managing, I read a few articles about a new (from 2017) treatment for RCD, using what is termed "Fecal microbiota transplant",  " process of transplantation of fecal bacteria from a healthy individual into a recipient" , tried so far on a few individuals with RCD with FULL RECUVERY of the intestines. Did anyone of you heard about it, about anyone who undergone the procedure?

    I'll be delighted and thankful for anyone from any were in the world who has a proven RCD to be in touch with me here.

  • 6 months later...
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Scott Adams Grand Master
Scott Adams
Posted

I am sorry that nobody replied to you for so long, and I hope that you found more information about this. As far as treatment for RCD goes, please have a look at the articles here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/ 

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