Ibs Vs Celiac Disease

[AlysounRI]

I grew up in an Italian American family and ate Italian food all of my life.

I never had any problems.

Then in my 20s, my digestion and intestinal distress started to happen.

Fast forward about 20 years and I have full fledged IBS.

That is the name doctors give it - and they suggest putting me on anti-depressant pills, which I refused.

My first encounter with someone who actually listened was a naturapath who suggested that I not eat wheat and see what happens, also that I stick to a paleo diet.

Going off wheat and learning how to cook Asian cuisines (mostly Indian) fixed most of it. I will always have an irritable digestive system, or at least I started to have one in my 20s.

I fell of the wagon and a few years later the IBS flared up again.

And now, I realize that I have a massive gluten intolerance as well.

So I have realized that I must remove all gluten from my diet, not just wheat.

But, to my mind, IBS is a "diagnosis of exclusion" in so many ways.

I have found that western medical doctors mostly want to solve it will pills.

That just isn't an answer to me.

Without the wheat, I was almost asymptomatic, without the gluten I really feel good and truly healthy.

Just a few things to figure out that my own body likes and needs to avoid within the gluten-free universe.

But, yes, mostly, things are much better.

I have suggested to others with IBS that they try avoiding wheat as an experiment and see what happens but they are resistant.

Judging from the length of replies to this thread, it seems that a lot of people here were given that diagnosis and cure was to go gluten free.

~Allison

[Johnstan]

Definitely "D." Been battling with "IBS" for years. Things have never really added up though because I had so many other symptoms, neuro, joint pain, chronic fatigue, multiple infections and illness, respiratory (how DOES all of that fit with IBS----it DOESN'T)...finally, finally, finally, the light bulb goes on and guess what, just after a short time of gluten free eating I can feel my whole body smile and sigh with relief. Good bye forever IBS.

[JBaby]

Yep, IBS diagnoses. Culprit is gluten. No IBS.

[Tidings]

After a colonoscopy a couple years ago, in which the doctor found no problems, I asked, half-dopey from the sedatives, "Then why am I having so many problems with my intestines??" and he said, "You have IBS, you need a high-fiber diet" and left me a nice little pamphlet about IBS. The only mention of Celiac/sprue or gluten was when *I* brought it up in the pre-procedure meeting with him, and of course, since I'd been "off" gluten for the most part for a couple years prior, testing was sort of pointless by that time.

What is amazing is that most U.S. doctors don't even CONSIDER Celiac/gluten intolerance even if you complain for YEARS about G.I. problems and all the other related symptoms. My G.P. was absolutely disdainful about it when I told him I was going off gluten because I suspected I had a problem with it... Also, recently, after I'd had some gluten off and on for several months, when I had some lab tests done, I also persuaded him to include the Celiac panel. The results were negative, but the overall IgA was quite high, and he goes, "You might want to avoid flour..." (This, after I'd been telling him for YEARS that I was trying to avoid gluten because of relentless G.I. problems.)

So much for Western medicine and its helpfulness! :-(

P.S. Just had more lab tests done yesterday and am hoping to pinpoint further what's really going on (because G.P. could not account for the high IgA), but am LOATHE to consider a "gluten challenge" and resume all that pain & dysfunction just to PROVE that gluten is the culprit.

[bincongo]

I am another IBS person and had it for 30 years. Now this year I find out I am a Celiac. I always had constipation unless I was having an "IBS" episode. I think everyone who has IBS should be tested for Celiac.

[Tidings]

I am another IBS person and had it for 30 years. Now this year I find out I am a Celiac. I always had constipation unless I was having an "IBS" episode. I think everyone who has IBS should be tested for Celiac.

Me too! :-)

[Takala]

Ok yall Ive never done this. Im 44 and have sufferd from "IBS" sence I was a kid so bad I would offten end up in bed. After the worce episode ever I finally went to a new DR. she ran some tests and I had low B 12 191. Nothing else was said. I was put on shots and put "Myself on the gluten-free diet and withinn 3 days the bloating stoped and I was not in pain . I have stayed on the diet now for 6 months. Back to the Dr. for more blood work and now cramping in my legs, still fatigued. So she says lets test for celiacs ? I say ive been on the diet for 6 months. She say, thats ok. Test was neg levels of 3. low b12 and now d. nothing else was said about that, though put back on shots. Oh by the way if I eat gluten my stomach swells to a 6 month pregnancy.She sugested the biopsy. What should I do? Im so tired now and I hurt . I need help. I am also a "c" with bouts of "d".

___________

Altho this post was from January, I'm going to answer it here because some people check the last page first

Low levels of vitamin B12 are a classic symptom of celiac or gluten intolerance. At that point your doctor should have been testing you for the cause of it, instead of merely giving you the vitamin, and making you wait for months for followup.

In my opinion, more doctors should listen to patients who tell them that they get sick when they eat bread or wheat or gluten, irregardless of what tests say. The time to test is when they're still eating it.

Imagine what would happen if everybody who had IBS was told to do the following: one week of truly absolutely no gluten, with a printed menu handout of exactly what to eat for the week, to make it simpler, and avoiding restaurants, with a food diary sheet to fill out every night, as in "how did I feel today after eggs and fruit for breakfast, salad and rice for lunch, and a meat and vegetable dinner ?" Then followed it by a week of mandatory "toast/cereal for breakfast, wheat sandwich for lunch, and wheat pasta for dinner," with the same food diary to be filled out ? How did you feel today? And at the end of the two weeks, the next appointment ? Or it could be 2 weeks off of gluten, followed by two weeks on. Not six months later. The contrast in physical reactions would be very dramatic.

When staying on a gluten free diet for months at a time, eventually the blood tests and even the biopsies can come out "negative," even if you have the disease, because you have removed the gluten protein that was causing the auto immune reaction. You're healing. You still will have the genetics, however, if you wish to be tested for that. About 30% of the population carries the HLA DQ genes which show they can develop the disease, if triggered. About 1 in 100 have celiac or gluten intolerance. If you are in that 30% group, it's statistically much more likely your symptoms are pointing to celiac or gluten intolerance.

If you have been off of gluten for a period of months, you may then have a false negative on the biopsy- the doctors know this, yet they schedule the things anyway sometimes, and then you are Officially Not Celiac when the results come back "negative." This isn't helpful to anybody but the insurance companies and to the hospital/labs, which are getting paid for the procedures anyway.

No matter what, given the difficulty of getting an accurate diagnosis with the medical system we are are stuck with, the most important thing is, if you feel BETTER on a gluten free diet, you should stick with it and refine it so you are not getting cross contaminated. Many people find that once they master the gluten free diet, they feel dramatically better overall.

Other people may have to give up or cut back on soy or dairy or dairy lactose to get the full beneficial effect. A few react to nightshades or corn or even tapioca, a common gluten-free substitute. Others are accidentally cross contaminating themselves and haven't figured out the culprit yet.

To get the so- called "official" diagnosis, the insurance companies and the medical profession in the U.S. currently insists on 2 criteria, a positive blood test (celiac panel ) and a positive biopsy of the small intestine. They also will not, typically, do a biopsy without the positive blood test. Another positive test is doing a biopsy on the skin next to a DH rash outbreak, but you don't hear much about that, either, as not everybody gets the rash.

But if you have been thru the medical wringer, for years, and made a good faith effort to get yourself tested, if you have the symptoms, and have repeatedly been blown off, or told that you didn't have a positive panel, or that it is merely "fibromyalgia," or "IBS," or "AIYH"** yet if you respond dramatically to a gluten free diet, you should give yourself permission to stick to it.

**All In Your Head

[Dellers]

I was told on my first app it was IBS and to keep a diary of what I eat. I done that and everything came back to gluten. My bloods were neg though being IgA deficient.

[Aphreal]

Probably half the board

and the other half who know they have a gluten sensetivity are still told it's just IBS.

He will do well on a gluten-free diet. Possibly low carb to. That helps me a lot!