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How Many More Diagnosis's Will There Be

lilleroy family

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lilleroy family Rookie
lilleroy family
Posted

:o My daughter was diagnosed with celiac in mid February and we are still having extreme complications from it, she has an engy tube on steriods and now the doctor wants to switch her to a medication called 6mp and believes she has an autoimmune myopathy in the developing stages of chrons disease. We know she has hashimoto's thyroiditis, celiac and now this. How many other celiacs have numerous diseases and ongoing difficulties? My child just keeps getting worse each time we take her in? Is there anything we can do or some doctor who is educated in celiac and its complexities? It seems the children's hospital we have her seeing the GI specialist at is just stabbing at the dark and meanwhile she is not getting better even with gluten free, sugar free lactose free diet in place. HELP

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taneil Apprentice
taneil
Posted

Get on www.enterolab.com and e-mail Dr. Fine. He has Celiac Desease and may be able to help you out. When you e-mail, don't worry if you don't find his exact e-mail I am sure it will get to him. He replies usually within the day if he is in town. He is in Dallas. I don't know where you are.

bonnieo Rookie
bonnieo
Posted

Read the book:

Breaking the Vicious Cycle: Intestinal Health Through Diet

by Elaine Gloria Gottschall

There is also a web site: Open Original Shared Link

flagbabyds Collaborator
flagbabyds
Posted

I have thyroid also, auto immune disorders run together so it is likely to have more than 1

ryebaby0 Enthusiast
ryebaby0
Posted

I'm so sorry you are still on a bumpy road. My son has an egg allergy, celiac, and autoimmune enteropathy (his body thinks his gi tract is a transplant). I think I've emailed you off-list about our travails? Anyhow, you might contact the U. of Maryland's Celiac research center (find them on the net), Dr. Joseph Murray at the Mayo Clinic (although he doesn't deal with children, but he has good insights, reads his email and is very kind). We were diagnosed,stabilized and discharged from Children's in Pittsburgh, and then we had a consult with Dr. Maria Oliva-Hemker at Johns Hopkins. The CHP doctors were very glad to have us get more input from Hopkins. My son was started on 6MP (mercaptopurine) in hospital but it was dc in favor of tacrolimus (prograf, or FK506) because he was too sick to wait for the 6MP to kick in (that can take weeks to work fully, but sometimes it starts helping within days). 6MP is where they start because it has fewer side effects. Many Crohn's and IBS patients take 6MP. This is a good thing for your daughter to try, it can help. The ng tube and steroids will help stabilize her, no matter how scary it seems~the steroids are not something anyone wants her on for months and months, but my son was on them (low dose to HUGE doses) for 3-4 months with no permanent effects. Doctors don't think of ng tubes as a big deal and they are safety nets. My son was dx in Dec. '03, stabilized only in May! It is a long road. Her issues are more GI and less celiac; no offense to those with celiac "only" . Don't EVER stop asking questions and pushing. Has she been an inpatient yet? I know it's scary to think about. Your instincts will guide you. Find a _Children's_ hospital near you and get there, and get some answers. Childrens' experiences, especially with gi, need children's specialists :) Let me know how it goes. We'll be praying for you and for her. (And don't forget to eat, and sleep if you can catch some)

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