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Celiac And Cystic Fibrosis


hilaryw

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hilaryw Newbie

My daughter had the positive celiac panel and biopsy (blunted not flat) recently. she has had chronic constipation, distended belly, stomach pains, etc. No real growth issues. But I've heard that the symptoms of celiac mimic those of cystic fibrosis, now I'm worried she CF either also or instead of celiac. I'm going to do the sweat test next week. She's 4 and has had no upper respiratory issues (other than occassional cough/cold) but now has a wet, yucky cough that has gotten me totally freaked. Thx for any comments!


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e&j0304 Enthusiast

I don't really have an answer to your question, but my daughter's new doctor also mentioned CF and said that if Ella continued to have growth problems and wasn't continuing to get better with the gluten-free diet that we would test for CF.

She mentioned that Ella's stools seemed like those of a person with CF because they were very grainy and almost sand-like in consistency. That has since cleared up with the gluten-free diet.

Sorry I can't be of more help. It kind of freaked me out when she said CF too, but I really don't think Ella has any of the other characteristics of someone with CF so I'm trying not to worry about it!

KaitiUSA Enthusiast

I don't know much about Cystic Fibrosis but she obviously has Celiac from the biopsy results. Cystic Fibrosis would NOT have produced a positive biopsy for celiac. The symptoms were most likely from that and would go away once being gluten free for a while(each person is different and some take longer for symptoms to go away)

I am sure it probably is possible to have both but she does have Celiac so it would be in addition to and not instead of . Let us know the results of the sweat test

JacobsMom Contributor

All I can tell you about this is when the docs were trying to figure out what was wrong with Jacob CF is one of the things they thought he had. He has always had respirtory problems so they just knew it was CF b/c alot of the Celiac symptons are just like CF. We went thru the sweat test and he didnt have it. I wouldnt worry about it b/c most likely it is just Celiac.

Good luck and keep us posted!!!

  • 2 weeks later...
hilaryw Newbie

Thanks for responding. The CF test was NEGATIVE Yeah!! Glad I did it. And let me tell you, my daughter is doing so well on the diet!! It's been 1 month and we totally notice a difference. She wants to eat, for one thing, and has more energy, and his happier, etc. Less anxious. Belly is not distended. But still constipated. Anyway. Thanks again.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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