Celiac Disguised As Ibs

[dea5508]

I have not had any testing other than two aborted colonoscopies (also had gallbladder removed a few months ago). However, I was diagnosed with IBS more than 10 years ago and it's just gone downhill from there. Suddenly I'm lactose intolerant, I hate eating cuz it brings misery, I am 99% constipated all the time and nothing helps, my weight has become a losing battle, I look like I'm pregnant when I even think about eating, and I can't get a successful colonoscopy cuz the doctor can't get me emptied out. And gas & bloating pain beyond description. I am addicted to carbs, especially pasta/bread/crackers, but have started deleting wheat from my diet. (I have much to learn about gluten however.) Might my IBS really be ciliac? Thanks.

[Carriefaith]

Based on your symptoms, I think you should definately get tested for celiac. However, you have to be consuming gluten in order for these tests to be accurate. If not, you could get false negative results.

[gf4life]

Might my IBS really be celiac?

Yes, it could be celiac disease instead of IBS (or in combination with IBS). I was misdiagnosed with IBS 17 years ago. My GI doctor still insists IBS is my problem, not gluten, but I know better. IBS is one of the more common misdiagnoses in celiac patients. Here is a link to an article that I found very informative. Open Original Shared Link

At the end it gives the result of one survey that was done, and this is what it says:

Of 686 patients with biopsy-proven celiac disease, 299 (43 percent) had previously been given the following incomplete or missed diagnoses: anemia, 47; stress, 45; nervous condition, 41; irritable bowel syndrome, 34; gastric ulcer, 23; food allergy, 19; colitis, 13; menstrual problems, 13; edema, 9; gallstones, 9; diverticulitis, 6; dermatitis herpetiformis, 4 and other, 36.

Of these 13 things I was told my problems were stress, IBS, a nervous condition, and eventually I had gallstones, menstrual problems, food allergies, and dermatitis herpetiformis...

God bless,

Mariann

[cdford]

I was misdiagnosed with IBS and a few other things for years before anyone thought to check for celiac disease.

[pixiegirl]

I think being diagnosed as IBS is pretty common for celiac's. My former doctor told me I had IBS and lactose intolerance for 10 years... then thru a round about way and long story I decided I was celiac... I immediately go off all gluten (I was carb crazy too) and guess what, in a matter of days all my IBS symptoms go away and after about 6 weeks i get brave and try regular milk... heck I'm not lactose intolerant either, for me it was all celiac.

Now this might not be the case for you but I'd certainly get tested. Be aware that the test isn't foolproof either, my test for celiac turned out normal, however I felt so wonderful without any gluten in my diet that I paid out of pocket to have my DNA tested and I carry the 2 main celiac genes. And every time I have a gluten accident I pay for it for a good 2 weeks. There is no doubt in my mind I need to be gluten-free.

Good luck, Susan

[jcgirl]

My GI insists that I have IBS. Over the last 10 years he has changed my diognosis, IBS, colitis, Inflamitory Bowel Disease and now back to IBS. I asked him about Celiac in January after finding this site and he insisted it was not my problem and would not order the celiac panel. I went gluten-free on my own and low and behold my food baby (looking pregnant after eating), diarehia and lots of pain all but diappeared except when I get glutenized. Told GI about this and still not tests ordered and possible celiac disease dismissed. Needless to say I will not be going back to this doctor and am now trying to get my son into Strong Children's hospital's GI department for testing. I feel that to many doctors write off symptoms as IBS and stress.

[jenvan]

Hey! I got the IBS diagnosis 12ish years ago too. What a coincidence

I think one can have a combination of both, but probably more often than not the Celiac is just misdiagnosed. ie.--My docs have been telling me for years that my chronic constipation was because I had IBS and that I just had to keep taking the Citricel (which didn't help at all). But you should know that since going gluten-free--my constipation is gone. Sounds like a similar story to yours in some ways. Definitely get tested !

[angel-jd1]

IBS is just a generic diagnosis when they have no clue what is going on. If they have run several tests or tried several things without a diagnosis of something else you are usually lumped into the IBS category.

One doctor at the NIH Conference on celiac said that IBS stands for "I Be Stumped" soooooooooo true!!!

-Jessica

[julie5914]

I am not sure if it a generic diagnosis, I think it does have some basis, but I DO think people should be tested for a lot of things before doctors diagnose IBS, celiac being one of those things. You have already had the colonoscopy, but I would also recommend breath tests for bacteria overgrowth and lactose intolerance. If all of those are negative and you do have IBS, going wheat free, though perhaps not to the degree that celiacs do (makeup, cross contamination worries) has shown to be beneficial. At the very least, go with soluble fiber instead of insoluble.

For years I kept hearing doctors say, eat more fiber, and I kept saying, I eat 3 times the fiber of a normal 20-something and it is getting worse! Shredded Wheat every morning, and it very well may have been poisoning me! Do get tested and help us raise awareness among docs who like to diagnose IBS without thinking about celiac.

[Anya78]

Sounds like it could be Celiac to me. I had many of the same problems that you mentioned for years (which ramped up after I had severe Mono, which may have been a trigger) and was told it was IBS, yet the fiber supplements and avoidance of fats and alcohol did little to help. I felt miserable through all of college. After my dad was diagnosed with celiac disease last year, I asked my doc to do the blood tests (which were positive) and then he sent me to a gastro for an endoscopy to confirm diagnosis. When I went back and told him it was Celiac, he apologized for telling me it was IBS all these years (which I thought was big of him)! I think this was an education for him as well and I'd imagine he'll be more likely to test future patients for celiac disease.

I'd suggest you insist on the blood test screening and seek out a gastro that is well-educated in Celiac.

If it makes you feel any better...I too was a carboholic, but I really don't miss too much of my former fave foods because I feel SOOO good eating gluten-free now. The whole carboholic thing...I've heard that people often crave the things that make them sick for some reason.

Good luck!