Originally Diagnosed Ibs-d...but Maybe Not True?

[Chattyaholic]

Hello everyone. I hope you don't mind me joining your group. I need all the facts, help and support I can get.

I have had "bathroom issues" (to put it as nicely as possible) for 10 years. About a year ago I finally talked to my doctor about it and she said it is probably Irritable Bowel Syndrome and I started taking Bentyl. It helps, but not really enough to make me happy. Plus it makes me dizzy and woozy so I really hate taking it, especially if I can't be at home.

Well, I had the bright idea to try a gluten-free diet and see if it helped. I started it September 29 so it hasn't been very long, but Web MD says if you have Celiac's Disease and you start a gluten-free diet you should see results within two weeks. I have seen good results already, but I don't know if I really have Celiac's or maybe just a wheat sensitivity.

I have a doctor's appointment (I'm type 2 diabetic so go every 6 months) on the 15th and I'm going to discuss my findings with her. I don't know if she will want me to have an endoscopy to find out if I truly do have Celiac's.

I'm really glad to have found this message board.

Has anyone else here been diagnosed with IBS and then found out it was really Celiac's all along?

[elye]

Has anyone else here been diagnosed with IBS and then found out it was really Celiac's all along?

Only about half of the membership base on here. . . . .. ......

Of course, I am exaggerating. However, many, many people take this journey -- I have read their posts here, talked to them in my day to day travels, and spoken to them at the local Celiac Association meetings - - a doctor's quick, perfunctory "diagnosis" of IBS, or Crohns, or fibromyalgia, or lupus, or clinical depression, then months or years of drug-taking and no alleviation of symptoms. I think the majority of those to whom I have spoken eventually came upon the answer, i.e., gluten trouble, on their own.

You should absolutely ask your doc for the celiac blood panel and an endoscope. The problem is, if you have been gluten-free for a time, this will likely cause a negative, whether it is false or not. You need to be consuming gluten to have these tests done.

Something else to consider: there can be false negatives with the blood work and the endoscope even in ideal conditions. Many here have also travelled THAT journey, as well. If you feel much better off the stuff, and the thought of going back on it for official test results is too dreadful, then perhaps you may just want to consider dietary response your diagnosis (personally, I feel that it is the most reliable diagnostic tool for gluten problems) and get on with your life feeling much better gluten-free!

[LDJofDenver]

My adult son was diagnosed with IBS prior to a new GI doc making the celiac diagnosis. I think it's a pretty common catch-all for otherwise unidentifiable gut problems.

My Mother has had awful digestive/gut problems all her life (I believe her to be an undiagnosed celiac), and her GI doc from a couple decades ago diagnosed her with colitis - probably the second-most wrong diagnosis for celiacs.

I've seen lots of people on this former state they had been wrongly diagnosed initially with IBS.

[summerteeth]

Put half of my family and myself of the IBS list. I was diagnosed with IBS-C at a very young age (age 12).

It is definitely a catch all diagnosis, IMO. Kind of infuriating, in retrospect.

[DingoGirl]

This makes me furious

because, I don't know what the statistics are, but there actually is almost NO SUCH THING as irritable bowel.....there is ALWAYS a reason and usually, it's celiac.

Have you made sure you are entirely gluten-free? avoiding the hidden glutens? it takes lots of sleuthing, but is SO worth it.

we're here to help.

[Chattyaholic]

This makes me furious

because, I don't know what the statistics are, but there actually is almost NO SUCH THING as irritable bowel.....there is ALWAYS a reason and usually, it's celiac.

Have you made sure you are entirely gluten-free? avoiding the hidden glutens? it takes lots of sleuthing, but is SO worth it.

we're here to help.

First of all, thanks to all who have responded so far, I appreciate the answers.

DingoGirl: I have tried to be entirely gluten-free, it is most easy to do that here at home. But we went out to dinner with another couple Sunday night and I had a Caesar salad with grilled chicken, thinking that would be fine. Nope. It wasn't. Major stomach/bathroom "issues" the next day, and in fact there is a thread here about that very subject. I think either the dressing or the chicken had wheat.

I spent double the time at the grocery store last week, reading labels and I was surprised, sometimes shocked, to see some of the things that do have gluten in them when you wouldn't think they would/should have it!

I am already feeling SO MUCH BETTER. And the trips to the bathroom have been GREATLY reduced, so I'm ecstatic about THAT!!

I am looking forward to reading on this board, and learning from all of you.