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Crest Syndrome Vs. Celiac?

helpyoubreathe

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helpyoubreathe Newbie
helpyoubreathe
Posted

My mom was diagnosed with CREST syndrome two years ago. The HORRIBLE fermenting of foods, vomiting, malabsorption has led to a permanemt port she frequently uses to get IV fluids.Complete malabsorbtion.SHe takes 4-5 Protonix a day just for SOME relief.She now weighs a mere 90 pounds, adn I am willing to try ANYTHING to help her. It seem she has ALL the symptoms of celiac.Even SHE noticed that the Gluten laden foods make her feel MUCH worse. SHe look like on of the Ethiopian children you see on TV. HEr little belly is HUGE...like a pumpkin...ANY input is MOST appreciated!

Terri Jones RRT.RCP.

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seeking-wholeness Explorer
seeking-wholeness
Posted

Terri,

It's great that you're here. Your mother must be so proud to have such a concerned and caring daughter!

If I am remembering correctly, CREST syndrome is related to scleroderma, an autoimmune condition that results in abnormal collagen formation and growth. Autoimmune conditions in general are more common in individuals with celiac disease, so it is definitely prudent to have your mother tested. Doctors can be remarkably stubborn when it comes to testing, though, so remember, "the squeaky wheel gets the grease!" DON'T take no for an answer! It would probably be a good idea to research testing through Open Original Shared Link as well, as a backup option or an adjunct to conventional testing. It seems to be MORE reliable than blood tests, actually, and it would be SO much easier on your mother's frail body than running the entire gamut of conventional tests! (Enterolab can also test for sensitivites to dairy and yeast, which could also be causing your mother distress.)

Am I understanding correctly that your mother uses her IV port for parenteral nutrition, and not just for fluids? If so, I wonder how hard it would be to find a gluten-free formulation for her to use. Maybe they're all gluten-free; I don't have any idea, but I know it would be vital to find one that is if she receives nutritional support that way.

Your mother's intuition is doing her a valuable service; by all means, honor it! Get some testing done, then ditch gluten for good. I wish both of you the best of luck as you pursue improved health!

  • 8 years later...
Aliciajoe Newbie
Aliciajoe
Posted

If I might ask how is your mom doing? We found out a year or so ago that my mom has CREST. Since then I found out I have celiac disease. But unnecessary weight loss at his point is nonexistent. I think her doc should test her but we'll see. Alicia

Darn210 Enthusiast
Darn210
Posted

Aliciajoe,

I just want to point out that this thread is very old . . . over 8 years. The original poster has not logged in (who knows if they have visited as a guest) since they made that post over 8 years ago.

Hopefully, someone else with experience with CREST will join the conversation.

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