I found out I had Celiacs about around the same time I was going to the doctor all the time for UC. I demanded to be tested for Celiacs because I have a sister who has had Celiacs her whole life and figured it would be worth it to test me too. My doctor disagreed and said it has nothing to do with UC, but he was an idiot. My blood test came back off the charts positive for Celiacs. I immediately went to a gluten free diet and have been eating gluten free since. It didn't save my colon though. I ended up getting my colon removed about 10 months later and ended up with a J Pouch.

I know everyone has different side effects with Celiacs. My sister knows it instantly when she has had gluten, she gets sick, diarrhea, nausea, etc. When I eat gluten, I can't ever tell. I don't feel any different except I would always notice I pooped more than anyone else.

I'm now 31 and I wonder if I hadn't spent 29 years of my life eating gluten if I would still have my colon. Who knows? Whats done is done and I can't change that, but I have to believe that there is some kind of correlation between Celiacs and me getting UC. Celiacs effects your small intestine and since we only have small intestines left, I will continue to eat gluten free the rest of my life to keep that sucker in pristine condition. Can't afford to lose any more guts.

As far as I know I had never been tested for it until after 20yrs with the J-pouch. test was negative.

I do not handle gluten well, but do not have Celiac's disease. It's just one of those things like cow's milk that my body cannot tolerate.

I don't find it that surprising that the doctor's do not test for it. They are two separate diseases with totally different characteristics under the microscope. No change of mistaking IBD for Celiac's disease.

Thanks for your responses. I was just sort of wondering about the standard of care in this type of situation. I know the diseases are different, but I also offered the idea to them many times because I felt that I didn't tolerate gluten well. I honestly thought that base had been covered long ago.

Karbear, What happens when you eat gluten? Just trying to figure out what my deal is with it. Thanks!

I was tested for Celiacs and tested negative. But they said that you need to be eating a lot of gluten and at that point I had already tapered down since I noticed a difference.

Now I tend to go gluten free and the biggest difference I notice is that my stools are a lot more formed - much less diarrhea and pooping more in one time than before.

Tests only know so much, you know your body!

My reaction is similar to SarahXYZ. My stool is much thicker when I do not eat gluten. Once I introduce gluten into my system, it becomes very watery.

I don't understand why your doctor's never tested you for Celiac's if you specifically asked for the test. Maybe it is not covered by your insurance and they were watching out for costs paid out of pocket. Or maybe they have their heads up their butts. I never asked before surgery, and never thought to ask. It wasn't until after surgery Celiac's was ever mentioned. I first thought, did I just have my whole colon removed for Celiac's, but then realized that was not the case.

You can be gluten sensitive without having celiac's disease. We have three family members who are gluten sensitive. At its worse it gives them diarrhea, at its best it gives them bad gas. We just cut it out of our diet for everyone and the problems are gone. Living gluten free is very easy after about a six-month adjustment period. The difficulty was my accumulating great gluten-free recipes for three meals and two snacks a day for seven days a week.

My understanding is that celiac disease/gluten intolerance affects the small intestine villi, not the colonic mucosa, so definitely different than UC.

That said, it is not uncommon to develop it later in life, after a UC diagnosis, or after colectomy. It has been underdiagnosed and misdiagnosed, but to my knowledge, you do not biopsy for it during colonoscopy. It is done via upper endoscopy (EGD). You have to be eating a high gluten diet for the blood test to be useful. Not sure about the biopsy though.

Here is a good link with info:
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

If you can improve your function by avoiding gluten, that makes sense.

Jan

My mother just had part of her colon removed because she did not know until she was 58 that she had celiac disease. She, like many others was misdiagnosed her entire life. I found out when I was 35 that I had celiac. I got tired of doctors telling me to just take a pill for my stomach or some steroid cream for the rash (dermatitis herbafortis) which they said was eczema on my hands that had been getting worse and worse over the last 10 years. So I did my own research and I stopped eating gluten and now I'm completely fine. There is new research out that suggests that there my be other proteins in wheat that people are allergic to besides gluten and that may be why so many people test negative for celiac when they actually are allergic or intolerant to wheat.

A decent gastroenterologist can recognize Celiac disease when he/she looks at the gut with an endoscopy. There is a specific cell change that happens when one has Celiac disease. There are many people who are sensitive to gluten with out having the diagnosis of Celiac.