cystic fibrosis and celiac disease

Hi Beth, I too have Cystic Fibrosis but I don’t have Celiac disease (I understand it to be an allergy to gluten and gluten, I believe, is in almost all foods). I wish I had some good medical advice for you and your daughter, unfortunately I don’t. But I definitely know what it’s like to have a very complicated diet! I am 44 years old and I have several confirmed diagnoses. I have CF related Diabetes, Chronic Kidney Disease, and naturally CF. Currently I am an inpatient and have been in the hospital for several months because of extreme nausea, throwing up, and a drastic weight loss (my normal weight is 115lbs, I am now 93lbs over a very short time period). Which, as someone who knows CF, such as yourself and your daughter, can understand why it is important to keep your weight up. With all those diseases you can probably imagine how difficult it is to choose the right foods to eat!!

Also, it is a shame that Creon 25 is the only option she has with enzymes!! Here, in British Columbia, Canada, I have access to Creon 10, which is what I take all the time. I would suggest for her to not take any, but that is not at all realistic, she definitely needs something to help her digest fatty nutrients for her body. I am terribly sorry that she doesn’t have any option for Creon 10, clearly they are still being made! Maybe you could request that they can be shipped to you?

And maybe, part of the reason why your daughter is reluctant to tell her doctor or dietitian is, even the well meaning ones, can be insistent on their medical advice. For example, I admit that I have not always been very consistent with taking my enzymes but my CF doctor keeps pushing that I do. Another possibility could just be the repetition of hearing the same advice over and over. Nobody wants to be talked to like they’re a child especially when the same doctor keeps saying the exact same thing. Hopefully that is not what you and your daughter are experiencing now. A better possibility is that the doctor doesn’t really know how to guide you. I have had that problem too. Very recently I asked my dietitian for food options and she was unable to guide me because food recommendations for each diagnoses are completely different. For example, my Nephrologist (kidney doctor) wants low fibre, low protein and very low fat foods. My Endocrinologist (diabetes doctor) wants me to consume high fibre, low carbohydrates and low fat dairy products. And, of course, you are probably very aware of the Cystic Fibrosis diet (high protein, extra fat, more salt and more calories). So I can definitely empathize with you and your daughter!

How are you doing today? Thank you so much for joining the conversation and sharing your personal experience and what I hope is some helpful information for @katbandola and her daughter. Sending support your way! -Beth (Team Member)