Hi my daughter has been on enzymes since her diagnoses last January. She is still having problems with diarhea and bloating. Even with her bowl movements floating in the potty. We went to the doc yesterday and he said she may have Celiac disease as well. She was tested for Celiac disease last year before her CF diagnoses and the test came back negative. The doc told us to retest because sometimes Celiac disease does not present itself in tests for 5 years, however the symptoms are present. Does anyone know anything about Celiac disease? and if what the doctor said is true? I know a little like that Celiac disease is having an allergy to wheat. Other than that though I am pretty lost.
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Anyone w/ CF and Celiac disease?
- Thread starter lflatford
- Start date
Lynsey, Before Cale was diagnosed with CF they tested him for Celiac. It is an intolerance to Gluten which is found in SOOO many foods, wheat products, flour, etc. To test him for that they put him under and took an endoscopy (biopsy) of his intestines to see if there was damage to the little 'fingers' in the intestines. The good thing about Celiac is with a strict diet, I believe any prior damage can be repaired. But if you don't stick to the diet, things can go bad. I will ask my husband when he gets home, but I am thinking there was a girl where we were from that had either CF and Celiac or diabetes and celiac. EIther way, it would change everything! Gluten is found in so many foods. However, grocery industries are becoming more aware of celiac and doing what they can to accomodate patients.
Have they suggested that you try to eliminate gluten from her diet yet? If you do a search for gluten free recipes, you may be able to get some ideas on what she could have to see if that would help!
Best Wishes!
Have they suggested that you try to eliminate gluten from her diet yet? If you do a search for gluten free recipes, you may be able to get some ideas on what she could have to see if that would help!
Best Wishes!
cfgirl2008
New member
What is the Celiac disease?
Tiffany 15 w/cf
Tiffany 15 w/cf
HollyCatheryn
New member
Celiac Sprue is an autoimmune condition in which the body (intestines specifically) begin to attack themselves and break down the lining when gluten is ingested. It can cause a host of symptoms and complications including stunted growth, anemia, learning delays, chronic pain, large amounts of foul-smelling and painful gas, and alternating diarrhea and constipation. An elimination diet, blood test and/or an endoscopy with an intestinal biopsy can be done to diagnose the disease. People with CF are often initially mis-diagnosed as having Celiac. However, Celiac clears up rapidly when gluten is removed from the diet completely. As long as gluten is removed from the diet the sufferer is symptom-free. With a misdiagnosed person, the syptoms may initially improve some, but will return. The two are not related and people can have both diseases. There is much speculation on the cause of Celiac. It can run in families and the chances of it manifesting in a susceptible person may be increased by formula-feeding, starting solids early, and/or immunizations - all of which have been found to increase autoimmune disorders by disrupting or altering the normal course of physiological development. Reading food labels and avoiding processed foods can help you remove gluten from your daughter's diet. The earlier you know and can treat it (if that is the problem) the milder her symptoms will be and the fewer the complications. Most people with Celiac have a tolerance level - meaning, they can consume one gluten-containing food a week or even two a day, but if they exceed their tolerance level, they will have symptoms. After gluten has been removed completely for at least two weeks, you can slowly introduce it back and see if the symptoms return. This is the best way to determine cause and to find a tolerance level. It is also completely non-invasive. If your daughter does not have Celiac it can be a different food/product sensitivity or it may be that the type of enzymes she is taking are not well-suited to her needs. I have had malabsorbtion, diarrhea symptoms while taking enzymes and a switch can sometimes clear things up. We went through 2 years of gluten-free diet with my daughter (we have a family history of Celiac and had already ruled out CF). She ended up just to have an infancy-sensitivity and grew out of it. She has not symptoms currently and an endoscopy while on an unrestricted diet shown no signs of Celiac. Feel free to email me (<A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A>) if you have any questions about what contains gluten or what alternatives are out there.
My daughter has CF and we are in the middle of finding out if she is also Celiac.
From what I have been told by our current GI doc, most of the blood tests for celiac are inaccurate. She goes in tomorrow morning for a colonoscopy to find out what is happening in the intestines.
It is my understanding that if you are celiac, you cannot eat any gluten products whatsoever, because even the smallest amount will cause damage to the villi -- I have not heard of anyone being able to tolerate a certain amount.
I received a lot of good information from celiac.org and celiac.com -- one or the other has a very comprehensive list of approved and forbidden ingredients -- it was very helpful as there are so many things out there with gluten and wheat products in them, you have to really read the labels of everything. Some things you just have to know, like soysauce -- doesn't say gluten or wheat on the ingredient list but celiacs cannot have it -- something about the fermentation process produces malt or wheat or something.... don't know all the exact details.
My best advice is go to a really good GI doc and have the colonoscopy done so you know for sure. There is a big difference between not eating wheat products because you don't feel well when eating them and the wheat products causing very serious damage to your intestines. You need to know which it is. We just switched my daughters care to Children's hospital, where she was being seen for her CF anyway -- we are much happier with the docs there. Hopefully we will know the results from the biopsies in a few days.
From what I have been told by our current GI doc, most of the blood tests for celiac are inaccurate. She goes in tomorrow morning for a colonoscopy to find out what is happening in the intestines.
It is my understanding that if you are celiac, you cannot eat any gluten products whatsoever, because even the smallest amount will cause damage to the villi -- I have not heard of anyone being able to tolerate a certain amount.
I received a lot of good information from celiac.org and celiac.com -- one or the other has a very comprehensive list of approved and forbidden ingredients -- it was very helpful as there are so many things out there with gluten and wheat products in them, you have to really read the labels of everything. Some things you just have to know, like soysauce -- doesn't say gluten or wheat on the ingredient list but celiacs cannot have it -- something about the fermentation process produces malt or wheat or something.... don't know all the exact details.
My best advice is go to a really good GI doc and have the colonoscopy done so you know for sure. There is a big difference between not eating wheat products because you don't feel well when eating them and the wheat products causing very serious damage to your intestines. You need to know which it is. We just switched my daughters care to Children's hospital, where she was being seen for her CF anyway -- we are much happier with the docs there. Hopefully we will know the results from the biopsies in a few days.
I am not normally apart of this list,but someone from another list sent me this post. My 2 year old daughter has CF and Celiac. You can email me if you want to for any information. My email is akhoma@cox.net. I would be more than happy to talk with you and answer any of your questions.
Anja -mom to Faith 2 years old next week with Celiac and CF and her 3 older brothers.
Anja -mom to Faith 2 years old next week with Celiac and CF and her 3 older brothers.
My friend has a 15 year old son with CF who was diagnosed as Coeliac last year. My firend and her sons were dx at the same time, she had always been treated for IBS. He is doing really well as long as he stays on a special gluten free diet. Actually, they are both looking great and have lots of energy. She also has a 13 y o daughter with CF and the coeliac dosen't cause any probs as she makes yummy gluten free for him and her and yummy fatty food for her daughter.
Hope all goes well.
T
X
Hope all goes well.
T
X
HollyCatheryn
New member
If Celiac is diagnosed there are lots of really delicious recipes out there. We mostly just eliminated things, but there are great products (Pamela's) for cakes, pancakes, cookies, bread, etc. that are gluten-free. There is also a neat recipe book for kids foods (Gluten Free Foods for Kids). It has all the exchange tables and makes the recipes really easy. We used it for breads and cakes and they were wonderful.
There are great recipes out there. I am apart of another list over at Delphi forums that is for Celiacs, and I have gotten some WONDERFUL recipes for our whole family. Most of the gluten free stuff is actually higher in fat and calories. We have gone gluten free in our whole house for my daughters sake. She is only 2 and has CF and Celiac. She has had NO trouble putting on weight with the new diet, and neither have I. LOL. If your child is diagnosed, I would be happy to give you any info to help out.
Anja
Anja