Ibs Vs Celiac Disease

[UIDancer]

I was diagnosed with IBS (the C part came later ) 6 years ago and fianlly discovered the real problem about 2 months ago through a lot of research and seeing a GI specialist. It seems to me that doctors call gut problems IBS when they don't know how else to diagnose... like IBS is the umbrella gut diagnosis. Just my 2 cents.

[jenvan]

I didn't mention this earlier, but definitely agree about the IBS-I-don't-really-know-what-is-wrong-with-you diagnosis. I was diagnosed IBS 13 years ago. That diagnosis is little help at all sometimes.

[printmaker81]

I have a question about this IBS vs. celiac disease debate. I was daignosed a month or so ago with celiac disease. I was definitely on the C side. My boyfriend was diagnosed years ago with IBS and is D all the time. We joke about being Jack Sprat and Ms. Sprat even though it's gross and we're both really thin. I don't really think he's really ever gotten much better. I am wondering if he is really a celiac. I know that he gets bad D after we've been out and he's had a few beers. It seems suspicious, but I don't want to be the girl who assumes everyone has what she has and push him to get tested. He had so many tests when they diagnosed him, upper and lower GI's blood work, etc. Plus, he's a picky eater, and I think he might rather die than go gluten-free (though he is incredibly supportive of me -he's even cooked a little since my diagnosis). Are there any tell-tell signs that it's not celiacs or that it is definitely IBS? We're young and he doesn't have very good health insurance, but should I push the subject with him? He has seen some improvement with an herbal supplement I got him but not complete relief. Any advice?

[jenvan]

Heather-

Hi! (Is your brochitis all gone now ?)

It certainly wouldn't be impossible that you both have celiac disease. One thing is weight loss--that is not listed as an IBS thing. And I would think most drs would say weight loss is a signal more investigation needs to be done. I had been diagnosed with IBS like 13 years ago. I think it is good to remember IBS as a condition that is diagnosed by a process of elimination. Meaning--the diagnosis should be made after other conditions/diseases have been ruled out.

[louie]

I was diagnosed IBS in my early 20's and went throught 12 years of getting sicker and sicker to the point of being unable to work for 4 years before a doctor diagnosed me with celiac disease.

If i knew anyone getting a diagnosis of IBS now, I would tell them to get tested for celiac before they make any dietary changes. I t might save them a lot of misery if they have been incorrectly diagnosed with IBS

cheers Louie

[Guest BERNESES]

I was diagnosed with IBS and a lactose intolerance two years ago and it got progressively worse. My friend, who is a doctor, jokes that IBS stands for "I'm Basically Stumped". I know how you feel about not wanting to think that everyone has it, but I now firmly believe (and granted, this is only my opinion) that IBS is not a very good diagnosis. Most cases need to be looked into more closely since like Jen said, it's basically a diagnosis by elimination.

[BamBam]

More poop talk!!

I started taking Zelnorm last October and that has caused a lot of the constipation to go away. I would be constipated for up to six days, then have four or five bowel movements in an hour, then diarrhea for a few days, then back on the roller coaster. I am still not very regular, and that gets my anxiety going once in awhile, especially if I travel. Any hints on staying more regular?

BAMBAM

[jenvan]

BamBam-

I always love answering the regularity question, because my issue was constipation--all the time, for years. It's an awful feeling. After going gluten-free, it is definitely better, but still not perfect. Below is tips I wrote in a post earlier on getting more regular. Hope it helps you!!

___________

I think one of the best things for constipation, natural vs meds, is pysillium halls. It is basically the natural, not synthetic form of fiber. ie. I used to take Citricel, never did much for me. It is synthetic fiber. Psyllium definitely made me feel better when suffering from severe constipation, which used to be pretty chronic for me.

Forgive the length--but if you are interested, you could buy some at a health food store--powdered psyllium husks/hulls. We order ours from Frontier: Open Original Shared Link. We mix it with Hibiscus powder Open Original Shared Link. The psyillum hulls are straight fiber, bulk up and absorb stool, toxins and carry it out. The Hibiscus powder helps ease this process, has very mild laxative qualities. We put about a spoonful of each in a full glass of apple juice (use slightly more psyillum than hibiscus), and chase with a full glass of water. You may get a few cramps as it carries stool out a few hours later, but for me, it was alway worth it. Best to take in the morning for me.

Also, another option is a few capsules of Magnesium too. Those definitely get ya goin'. An herbal laxative, for note too, is called Senna. However, a laxative like Senna is only a temporary help, and shouldn't be used long term, herbal or not, as I'm sure you know. However, the psyillum is something you can use all the time, since it is just fiber. And magnesium is good for you anyway...

[jenvan]

PS BamBam, I took Zelnorm for a while too. It sort-of helped, but I didn't like relying on it. Also thought--as far as food goes--do you eat fiber in foods often? If I can get myself regular, foods like fruit, beans, lentils and flax will help me stay regular. If you want more info on food I can give you that too.

[printmaker81]

Thanks for the advice guys,

My friend, who is a doctor, jokes that IBS stands for "I'm Basically Stumped"

I think it is good to remember IBS as a condition that is diagnosed by a process of elimination. Meaning--the diagnosis should be made after other conditions/diseases have been ruled out.

Looking at IBS that way makes it a little clearer that I need to make myself the pushy girlfriend this one time, just in case. I know he hasn't really gotten worse but has definitely not gotten any better. A few little blood tests couldn't be that bad. It could also be some other food intolerance (lactose/fructose, etc), not just celiac disease. He is sooo skinny (like 6'2" and around 140). He's from a small town in the middle of no where, so I can definitely see the doctors in his area giving up prematurely (His doctor told me if I gave up gluten I would notice a difference in a week or two, but only after I offered the fact I thought I might be Gluten Intolerant).

Heather

P.S. to Jen, Yes, I am feeling MUCH better, my wonderful celiac disease doctor gave me an incredible home-remedy, so I could quit the awful antibiotics!

[jenvan]

Heather--

What was the home remedy? I'm curious--and always looking to stay away antibiotics... after having been on them nonstop as a child/teenager! Glad you're better!

[cgilsing]

I was diagnosed with IBS as well before going gluten free. My IBS medication wasn't helping one bit, and my mom read an article about the high percentage of people with Celiac Disease that were being mis-diagnosed with IBS. As it turns out I have several aunts/uncles, grandparents, and great grandparents with celiac disease. That was all the convincing I needed and I went on a gluten-free diet. I immidiatly felt much better after getting my diet under control. However 6 months or so later I decided that I wanted diagnosis from someone other than my mom. I went for an upper GI, which came back inconclusive. Apparently once you start a gluten-free diet there is no way to accuratly diagnose celiac disease.

If for nothing else, so his medical records will be accurate, he should go for an upper GI BEFORE he starts his new diet.

[judy05]

An Upper GI x-ray will not diagnose Celiac. Only an Endoscopy with a biopsy will confirm Celiac. This is the "gold standard" that most Drs accept, also a genetic test and a positive reaction to the gluten-free diet. It really depends on the physician. An Upper GI can reveal Acid Reflux which is often a precursor of Celiac.

[julie5914]

I don't think anyone really has IBS. UNC Chapel Hill has a center for Gastrointestinal Research - one particularly for motility - they do a lot of IBS studies. The one that I participated in test patients for all kinds of other things, as well as mobility. So for the mobility, they basically stick a sensor up there with a balloon, fill up the baloon with air and watch the monitors to see how your colon reacts and ask you how much it hurts, since IBS patients are supposed more sensitive.

Well they found that my colon and pain reactions were normal and found me positive for celiac. I am so anxious to read their final findings of the study, but it will be years - they need over a hundred more participants - it is an overnight study, but they pay you $250. Go to www.unc.edu and search for IBS to see if you can find it. The conact person is Lenore Keck, a wonderful nurse.

Even my GI nurse praticioner said that too many people go for years with people telling them they have IBS or sensitive stomachs and never realise that they could and should get tested for celiac and start feeling better. I honestly feel like anyone who doctors want to say has IBS should have the blood tests for celiac.

[Guest BERNESES]

Thanks for letting us know about that- I live in Nh but it's worth checking out as IBS is my formal diagnosis too but I don't buy it for a minute! I live in NH but have been to Chapel Hill and if I could get a cheap flight, I'd do it. I wanted to ask you what motility and mobility are. I assume it relates to the colon, but what exactly do thos things mean?

Thanks and I'm really glad things worked out for you! Beverly

[Guest BERNESES]

I just looked it up. Here's the link:

Open Original Shared Link

Unfortunately I can't do it as they're looking for North Carolina residents only, but if anyone out there is from NC, you should look into doing it!

[unsinkable]

I was diagnosed with IBS about 20 yrs ago, but when I was diagnosed wit Celiac Disease about 10 yrs. ago, I figured they had misdiagnosed IBS. Unfortunately I have BOTH!!

Can anyone else who has both share with me how they tell the difference between an IBS attack and a gluten attack??? I had dinner at a nice restaurant last night, and the chef assured me my meal was gluten free. It was a bit spicy and high fat though. Today I am very sick - explosive D, nausea, painful cramping, exhaustion, low mood, etc. So, here's my big Question:

HOW DO I KNOW IF THE CHEF AT THE RESTAURANT MESSED UP ON THE GLUTEN THING, OR IF THE MEAL WAS JUST TOO CHALLENGING FOR MY IBS???

ANYONE??? HOW DO WE TELL THE DIFFERENCE???

Thanks and blessings to you all,

Karen

[Rothane]

I guess my husband is unusual because he had no real digestive symptoms before he was diagnosed. He was diagnosed as a result of finding out that he was severely anemic, after a routine blood panel his doctor ordered to check his cholesterol. His doctor ordered an endoscopy/colonoscopy to find out if the anemia had been caused by an internal bleed. His gastroenterologist found the flattened vili and ordered tests, and found that my husband has celiac disease. After going gluten free, DH said that he didn't even know he had digestive issues until they weren't there anymore, but it hasn't been anything dramatic.

I've been tested now because I noticed the same thing -- my digestion is a lot more stable when I'm eating gluten-free with him. Not only that, but I had digestive upsets after I did eat gluten, mostly when we went out to dinner. We'll see when the test results come back.

[jkr]

I guess my husband is unusual because he had no real digestive symptoms before he was diagnosed. He was diagnosed as a result of finding out that he was severely anemic, after a routine blood panel his doctor ordered to check his cholesterol. His doctor ordered an endoscopy/colonoscopy to find out if the anemia had been caused by an internal bleed. His gastroenterologist found the flattened vili and ordered tests, and found that my husband has celiac disease. After going gluten free, DH said that he didn't even know he had digestive issues until they weren't there anymore, but it hasn't been anything dramatic.

I've been tested now because I noticed the same thing -- my digestion is a lot more stable when I'm eating gluten-free with him. Not only that, but I had digestive upsets after I did eat gluten, mostly when we went out to dinner. We'll see when the test results come back.

The same thing happened to me in regards to the anemia. They thought I was bleeding somewhere in my intestine. I had both colonsocopy/endoscopy and they found celiac with the endoscopy. I had intermittent issues with IBS all of my life, but like a lot of people, I just thought my bowel was irritable.

I do feel so much better overall and I didn't realize it until I went gluten free.

Good luck to both of you. Even if you don't have celiac, it's better to eat gluten free anyway.

[nu-to-no-glu]

Andrea, you just didn't know the loaded question you were asking I'm in agreeance with several of the other posters about IBS not being a real diagnosis. I was mis-diagnosed with IBS by about 5 different drs since childhood. (I was even once told I had Chron's disease). My current dr believes that IBS is a symptom and not a diagnosis. I have to say, through personal experience, I'm starting to believe that. I have been on every IBS medication available and none of them did the trick! I'm hopeful your husband will find relief since you found this site. It's amazing how great I feel since starting gluten free!

[angieInCA]

My friend, who is a doctor, jokes that IBS stands for "I'm Basically Stumped".

OMG! That is exactly what I said to my Dr when he first threw out the possible IBS diagnosis to me before testing. He said' "It's probably just a case of IBS".

I said, "Doesn't that mean I'm Basically Stumped and just want to write a perscription?" and "Isn't IBS really just a symptom of something else really going on?"

He then said "I guess we could test for celiac disease". Duh! you think!!!!!!

[glutenfreeinminnesota]

First I want to say I am so grateful that I found this board!

My husband has been suffering from was diagnosed as IBS for about 7 years now. After just talking with a friend who was told she had a gluten allergy, I think this may be what my husband has too.

He is starting immediately on a gluten-free diet. I am just wondering if anyone else has been diagnosed with IBS and found that it is a gluten allergy?

I am just finding out about this disease so any insight is greatly appreciated.

Andrea

I was told IBS, then went on a HIGH fiber diet...which involved A LOT of wheat...wasn't getting better so I got a colonoscopy and endoscopy and low and behold...I have celiac.

[Lisa16]

I was first diagnosed with IBS-D in 1984 after alredy being sick for a number of years.

The thing that ticks me off about it is that I was repeatedly told "there is absolutely nothing we can do about it. You will have to learn to live with it. But the good news is that IBS does not affect your overall health." So I lived with it. It got worse. I downed lomotil, immodium, kaopectate, pepto.... you get the picture. I tried more fiber and I starting passing what looked like pure bile. But I told myself there was nothing they could do and lived with it. It was hell.

Then in 2000 they did the bloodtest. It was positive, so they ordered an intestinal biopsy. "Irritated, but not flattened," they said. So no celiac diagnosis. "You are lucky," the GI said "Celiac is awful." I got worse.

But it wasn't until 2007 that they figured it out and I got the official diagnosis. What a difference.

The sad thing is this story is not unique at all around here. I simply cannot believe how bad my doctors were at finding it. I saw scores of doctors in that time and every single one of them missed it. And then more of them missed the implications of the positive blood test.

Here's what I think-- for what it's worth. Basically if you have been diagnosed with IBS, something is wrong. You either have a problems with something you are eating OR you have some kind of physical problem with the digestive tract. If you have IBS, it is your body's way of crying for help and you need some testing to figure out what is going wrong.

[Brittany2]

I was first diagnosed with IBS-D in 1984 after alredy being sick for a number of years.

The thing that ticks me off about it is that I was repeatedly told "there is absolutely nothing we can do about it. You will have to learn to live with it. But the good news is that IBS does not affect your overall health." So I lived with it. It got worse. I downed lomotil, immodium, kaopectate, pepto.... you get the picture. I tried more fiber and I starting passing what looked like pure bile. But I told myself there was nothing they could do and lived with it. It was hell.

Then in 2000 they did the bloodtest. It was positive, so they ordered an intestinal biopsy. "Irritated, but not flattened," they said. So no celiac diagnosis. "You are lucky," the GI said "Celiac is awful." I got worse.

But it wasn't until 2007 that they figured it out and I got the official diagnosis. What a difference.

The sad thing is this story is not unique at all around here. I simply cannot believe how bad my doctors were at finding it. I saw scores of doctors in that time and every single one of them missed it. And then more of them missed the implications of the positive blood test.

Here's what I think-- for what it's worth. Basically if you have been diagnosed with IBS, something is wrong. You either have a problems with something you are eating OR you have some kind of physical problem with the digestive tract. If you have IBS, it is your body's way of crying for help and you need some testing to figure out what is going wrong.

That's what my gastro said to, he believed that when you have IBS it really is only a large symptom of a hidden issue, that it is probably from the many diseases that man kind hasn't discovered yet. Its just so easy for doctors to say, you have IBS, then give you medicine for it... When I started to take the medicine while eating gluten I would feel extremely bloated, sick, and very faint.

[ragidyann]

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".