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Celiac - Now Diagnosed With Colitis As Well

elfkin

By elfkin
in Related Issues & Disorders

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elfkin Contributor
elfkin
Posted

My three year old was diagnosed (blood test, endoscopy, and DNA testing) with celiac almost two years ago. He has been strictly gluten-free ever since. He began to have blood in his stool a few months back. At first, it was only a little streaky. I assumed contamination and checked and double checked his diet. The blood became more and more frequent and he had more of it. After a series of Doc. visits recently, they did a colonoscopy this week. It looks like he will be diagnosed with ulcerative colitis on top of the celiac. Has anyone else had this experience? I am really rather shocked. I just didn't expect fot him to have two diseases on top of his severe allergies, anaphylactic to nuts and lactose intolerance. Can anyone shed some light on this or offer comment?

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elfkin Contributor
elfkin
Posted
  • Author

:blink: Wow.

Am I the only one who has had this occur? Isn't there anyone else who has had trouble with this? Now I am really worried.

May9 Rookie
May9
Posted

I am 23 years old and am the only person in my family to have Celiac. I also have been recently diagnosed with Crohn's Disease (a type of colitis). My gastro told me it is a 1 in a million chance to have both diseases. I nearly died from them because they caught the celiac first and thought all my crohn's symptoms were from my celiac. It finally took a long hospital visit, blood test showing no BUN (by product of burning energy) and a 2nd colonoscopy to diagnose my crohn's.

I suggest taking your son to see a gastrointerologist (SP?) if you haven't already. Ask the gastro about crohn's disease. Don't feel stupid about asking either. If I had to do it over again I would have asked my doctor about crohn's and would have saved myself a lot of pain for 2 years.

Just to give you a little hope. I have now got my crohn's almost under control by medicine and am in my senior year of college.

Hope everything is okay. Blessings, May9

corinne Apprentice
corinne
Posted

I have a type of colitis (collagenous) not celiac disease. My mother has celiac disease and my gastroenterologist said that this type of colitis, although extremely rare (2 per 100 000) is associated with families with celiac disease. I'm not sure if there is a correlation between celiac genes and other types of colitis. Colitis is an up and down thing. Most of the time it's under control with a gluten free (and dairy, soy, etc) diet, but I do have flares from time to time and need medication.

  • 1 month later...
Susanwisely Newbie
Susanwisely
Posted

Gosh I thought I was having it bad having severe celiac disease. I am interesting in hearing more about having celiac disease and Crohns Disease? I am getting a barium Swallow soon ordered my my specialist and dont understand why he would like me to have this. I am 23, almost 24 yrs old and I am only 84 lbs in weight. I think there is something else wrong than celiac disease. I eat crazy amounts of food, I am on prescription food supplements Fortisip drinks 3 x per day and I still cannot gain weight. I sometimes lose weight. I have lost interest in my social life, clothes are very hard to fit me and hang off. Ive lost so much friends because of being paranoid about my weight. I feel like there may be more to this. From all the stories I read about people gaining too much weight being gluten-free. I am def not eating any gluten. Can you please help possibly?

  • 1 month later...
Elena M Newbie
Elena M
Posted
I am 23 years old and am the only person in my family to have Celiac. I also have been recently diagnosed with Crohn's Disease (a type of colitis). My gastro told me it is a 1 in a million chance to have both diseases. I nearly died from them because they caught the celiac first and thought all my crohn's symptoms were from my celiac. It finally took a long hospital visit, blood test showing no BUN (by product of burning energy) and a 2nd colonoscopy to diagnose my crohn's.

I suggest taking your son to see a gastrointerologist (SP?) if you haven't already. Ask the gastro about crohn's disease. Don't feel stupid about asking either. If I had to do it over again I would have asked my doctor about crohn's and would have saved myself a lot of pain for 2 years.

Just to give you a little hope. I have now got my crohn's almost under control by medicine and am in my senior year of college. t

Hope everything is okay. Blessings, May9

I think you might be interested in this article concerning the prevalence of Celiac disease in Crohn's patients. My husband has a preliminary diagnosis of Celiac (as of a month ago) and the colonoscopy just showed he has ulcerative colitis also (related to Crohn's). The article is on this website.

https://www.celiac.com/st_prod.html?p_prodi...-38107289997.0a

It's wonderful you are doing well. Definitely gives us hope!

Guest Doll
Guest Doll
Posted
My three year old was diagnosed (blood test, endoscopy, and DNA testing) with celiac almost two years ago. He has been strictly gluten-free ever since. He began to have blood in his stool a few months back. At first, it was only a little streaky. I assumed contamination and checked and double checked his diet. The blood became more and more frequent and he had more of it. After a series of Doc. visits recently, they did a colonoscopy this week. It looks like he will be diagnosed with ulcerative colitis on top of the celiac. Has anyone else had this experience? I am really rather shocked. I just didn't expect fot him to have two diseases on top of his severe allergies, anaphylactic to nuts and lactose intolerance. Can anyone shed some light on this or offer comment?

I am sorry to hear about your son. :( He must be a very brave kid! Unfortunately, autoimmune diseases tend to cluster, as they are all genetically related. If you have one, your risk increases that you will get more. I have quite the collection myself! ;)

Some people claim that being on the gluten-free diet helps prevent more autoimmune diseases from occurring, but there is NO evidence to support this claim. At most, it may help delay the onset, but obviously it cannot prevent other autoimmune diseases from occurring. It is not uncomon to have Celiac and/or Crohn's or UC.

You might want to have him on an anti-inflammatory diet.

My heart goes out to you. I understand that is must be very hard to see your child so ill. Remember that knowledge is power, and the more you know, the more you can help your son. Do you have a good pediatric GI specialist? Is there a support group in your area for parents of kids with chronic medical conditions?

Just know that your son will be OK. It will take more work than for an average kid to keep him healthy, but it can be done! :)

P.S. I assume they have checked for other causes of bleeding?

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