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Cystic Fibrosis And Celiacs, Aren't I Just The Lucky One?

2 posts in this topic

Okay, so I am 28. I was diagnosed with Cystic Fibrosis at 6 months old and struggled to maintain weight and stay out of the hospital all my life. At 26 I went in for a endoscopy to look at my angry pancreas and found out I had Celiacs. I went gluten-free and saw some symptom improvement and then after two years and a wicked struggle with reactive arthritis I figured out I was having the same reactions to dairy that I was gluten. I also eliminated soy at this time because it seemed to irritate me too. Now, folks with CF routinely take prescription strength pancreatic enzymes because our pancreas doesn't produce them, (pancreatic insufficiency). I felt this masked my Celiacs symptoms, possibly for years. These enzymes periodically need to be increased as a CF person ages but the main reason I'm posting this is 1.) If you have Celiacs and aren't improving even with eliminating other foods you should get tested for CF. Yes, some docs still say "Oh that's a disease usually diagnosed as a child." but the oldest person to be diagnosed with CF was in her 60's and the vitamin deficiencies and stomach issues as well as other health problems are the same for CF as they are Celiacs. 2.) Since going Gluten-Dairy-Soy free I've not had a normal BM and I was wondering if anyone had repeat endoscopies that showed healing or gave them any insight cause I'm considering that. At first after eliminating the dairy and soy I felt a little better but I was having several normal BMs a day. Now I'm either not going or going too much. If I go to my CF docs they will say it's probably my Celiacs issues because they know nothing about Celiacs and they don't really want to make it their problem because God forbid they earn the money my insurance company pays them, or they'll just go to their old stand by and raise my enzymes which could cause all sorts off issues (imagine a bunch of enzymes designed to break down food running out of food in your tummy to nom- they turn to your stomach lining and it's painful.) So If anyone has any tips or tricks here that might help me get back to regular again let me know. I've done the elimination diet and tomatoes and potatoes are thankfully my friends and fruits and veggies are nice to me as well, I avoid Quinoa and stick to rice and potatoes for my starches. Anyone tried Cultrel or something like that?


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Sorry to hear of your problems.  You might want to try a probiotic but I think Culturelle has dairy in it.  I could be wrong on that.  We get ours online at Swanson.  Free of all of the top 8 allergens.  Daughter has to take it because she is missing her appendix.  Although I can't say that it will help you, it sure couldn't hurt.


I can relate on the Drs. though.  I have mulitiple medical problems.  Each specialist I see seems to tell me...  Your problem is this!  You don't have that!  They all contradict each other and it surely is frustrating!


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