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Anyone With Celiac And Crohn's Disease?


Bri's mom

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Bri's mom Apprentice

My 21 year old daughter was diagnosed with Crohn's 6/06 and Celiac 12/06. Just wanted to know if anyone else has both these diseases. She is not coping well at all. There seems to be very few foods she can eat with both these diseases. Sure could use some help! I have already learned so much from you guys. My daughter said she felt like a freak and I guess I was feeling like a freak myself trying to help her.

Thanks,

Bri's Mom


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NicoleAJ Enthusiast

Well, I have ulcerative colitis, which is very similar to Crohn's, instead of occuring anywhere in the GI tract, however, UC confines itself to the colon and rectum. I'm having a lot of trouble because I've been having a flare-up for months now, and i just can't seem to get into remission. My doctor decided to give me a new med today to see if it works any better than the old one, but it's an aweful experience to have both celiac and an inflammatory bowel disease at the same time. I really feel for your daughter. I'm 27 now, but when I was 21, I had an unbelievable bout of bad health for a few years. I hope that she gets the help she needs. I find plenty of low-fiber gluten free options, but I cook or prepare most of my own food--I don't know if she's living at home or in a dorm, but that will have a huge impact on her ability to find food. If you'd like suggestions, I can provide some.

runnerjen Apprentice

Yes, I do, sort of. I haven't been officially diacgnosed with celiac, we're still working on that, but I am gluten free. Blood tests for celiac are positive, but my endosopy came back negative. Since being gluten-free I haven't had any migraines or hot flashes and I'm sleeping better. BUT, stomach issues are still there. I have ileitis, which is Crohn's disease. I've been on Pentasa for a while, which I have to take 8 times a day. I'm still working with my gastro to figure out what works best for me, but I still have major IBS-like symptoms. Foods for me are pretty bland - rice, rice pasta, potatoes, chicken, homemade soups, canned fruits (per suggestion from my nutritionist, they are easier to digest) and I try to eat veggies, though they seem to hurt more than help. It's more a less a touch a go situation. Has she seen a nutritionist? I went to one that specializes in Celiac, she has it herself, and she was extremely helpful and suggested a lot of foods.

jen

babygirl1234 Rookie

im not being noisy or anything but i just had a scope down the throth and a clonscopy yesterday because ive been having lower stomach pains in the lower part of my stomach and they did biposes during both and i need to wait 1-2 weeks what im wondering is how did they found out that your daughter had corns dis? i had dyarry blood in my stool and inflamed bowl did they out by doing a bypis as of right now they are treating me for my acid reflex and can you have both celiac disease and cron's dis?

runnerjen Apprentice
im not being noisy or anything but i just had a scope down the throth and a clonscopy yesterday because ive been having lower stomach pains in the lower part of my stomach and they did biposes during both and i need to wait 1-2 weeks what im wondering is how did they found out that your daughter had corns dis? i had dyarry blood in my stool and inflamed bowl did they out by doing a bypis as of right now they are treating me for my acid reflex and can you have both celiac disease and cron's dis?

I had an lower GI series and crohn's was found from that. I've never had a colonoscopy. There are also some blood tests they can do to confirm diagnosis.

NicoleAJ Enthusiast

I've had three colonscopies over the course of five years--they didn't find anything on the first two, but on the third one, they could easily see bloody ulcers in the colon--the biopsies confirmed it, but they knew that they would because it was so obvious. Biopsies of the colon can also confirm microscopic colitis which Dr. Green discusses in his book, Celiac Disease: A Hidden Epidemic. Babygirl1234, did they tell you that they could see anything visually? That might give you a little bit of insight. Good luck waiting for your results--I think we can all sympathize since so many of us have been there before.

babygirl1234 Rookie

my aunt told me that they found a plopy when they did the upper scope and they are doing a byopice to see what kind of polpy is was/is and some byupse too but im hoping they find something and they the polpy wasnt anything serious


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Bri's mom Apprentice

Hey everyone who wrote back about having crhon's and celiac. My daughter went to the ER with chronic, bloody diahrreah on 6/06...they admitted her that night and couldn't get things under control. They did a colonoscopy the 3rd day and she was diagnosed with crohn's. The 5th day a stool culture came back positive for Salmonella (KFC). She has been in remission since July. Then started throwing up everything she ate about two months ago and her GI dr. took a biopsy on 12/27/06 and it came back postive for celiac. She is a full time college student majoring in accounting. So you can see how stressful her life is right now. My husband transferred to Savannah where she lives so I can cook and learn so much from all you wonderful guys. She doesn't live with me, but when are only minutes ago. I appreciate you so much for writing me back and please, please send any recipes you have available. Bri's nutritionist is more geared for diabetic's and heart patients, but has been helpful (one visit so far).

Thanks again everyone for your help and I hope I have been helpful answering your questions. Please stay intouch.

Bri's Mom

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
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    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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