IBS - help needed

I was diagnosed w/ IBS a few years ago. I take a daily probiotic recommended by my family doctor and GI doctor. I have also been doing some research and people who have IBS are gluten sensitive but not allergic. I did try cutting out gluten for a couple weeks and felt better, and of course I reverted back cause I thought it was all in my head but it didn't last long I had to cut out 95% of gluten. My IBS is much better now.

annebaby1431 wrote: »

I was diagnosed w/ IBS a few years ago. I take a daily probiotic recommended by my family doctor and GI doctor. I have also been doing some research and people who have IBS are gluten sensitive but not allergic. I did try cutting out gluten for a couple weeks and felt better, and of course I reverted back cause I thought it was all in my head but it didn't last long I had to cut out 95% of gluten. My IBS is much better now.

I've had relatively minor IBS for years. About 3 months ago I tried eliminating gluten as an experiment to solve some of my own stomach issues, but I did the same thing you did! I was symptom free for a couple of weeks, then got to thinking "naw, this can't be it, I've got to be a crazy hypochondriac", went back to it and had an even worse reaction.
Now I am off wheat (and gluten, just for good measure) for a month while I deal with what my doctor guesses is acute gastritis. What fun it is...
Good luck to all, and congrats to those who have cracked the code!

pisceanprincess wrote: »

Thanks for this thread. I'm currently going through this right now and my doctor has me working with a nutritionist to help find my triggers. I have been diagnosed for years. Occasionally, my monthly hormones would cause havoc to my body and no one knew why. They would just say take aleve or midol. I now know that Sara Lee whole wheat bread and dairy are just a few of my triggers. Also, I don't like taking prescription meds so I asked people at my local whole foods what did they recommend. I was given a probotic. HTH

Raw sauerkraut also has pro-biotics. I eat a few tablespoons every day.

My IBS gets worse from stress, so please try anything to get in under control (as im sitting here dying from pain, during finals week!!!). Another trigger for me was beer. I had two beers with a friend one night, woke up in the night with horrible pain, fainted from the pain and broke my nose!! So, I would stay away from alcohol, sugar, caffeine, and anything high fat. I had my gallbladder removed which brought on my IBS and indigestion. I'll have a week of diarrhea and a week of constipation and pain!

I'll be perfectly honest - I get really, really frustrated by the IBS diagnosis. I have celiac disease and another disorder, both of which are quickly and happily misdiagnosed as IBS by untold numbers of doctors. For my disorder, I think at least 1/3 of those I know with it were first diagnosed with IBS.

I agree with vanilla warfare - it's a dumping ground for all the conditions that aren't properly diagnosed. Personally, I believe that eventually there will be no IBS, because the medical community will have figured out all the various conditions that were ACTUALLY the cause for the symptoms. And maybe then, people with get more help.

Something I was surprised to find out: IBS was originally supposed to be a diagnosis of exclusion. Or in other words, you were tested for OTHER possible reasons for the symptoms, and if they didn't have any conclusions, then you were given a diagnosis of IBS. It really was the dumping ground, the diagnosis of: we don't know what you have, but this diagnosis confirms that you DO have something physical going on, even if we don't know the cause.

This has changed so that doctors now generally assume that if you have the symptoms, you have 'IBS.' There is no known cause, it's essentially a list of symptoms, but now that list of symptoms has become a diagnosis, no matter how many other diseases or disorders those symptoms ALSO match.

The only problem is that there is no cure for IBS, but there are cures or treatments for many of the other conditions that a patient could have with the same symptoms. And doctors giving a diagnosis for IBS so quickly means that patients are unlikely to be properly diagnosed if they happen to HAVE any of these other conditions.

Which can be celiac disease (thankfully you're being tested - many people aren't and are given an IBS diagnosis anyway), Crohn's, parasites, enzyme deficiencies, gall bladder problems, food intolerances, food allergies, mast cell activation disorders, histamine intolerance, fructose malabsoption, SIBO, poor gut bacteria - the list just goes on and on.

And many of the things listed as 'common' for IBS are actually 'common' for some of these other conditions that are rarely tested for. Most are affected by dietary changes, for example.

Another example, Mast cell activation disorders (http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf - which are thought to be 'rare' but now experts believe are more 'rarely diagnosed' and may be much more common than celiac disease) and histamine intolerance cause problems due to too much histamine in the body. Histamine is released whenever we feel stressed - so stress frequently causes gut symptoms in people with MCAD and histamine intolerance.

If a person with IBS only has symptoms when they eat a few different foods? It's more likely they have a mild allergy or food intolerance to the food, rather than IBS. However, doctors are typically taught in medical school that food is rarely the cause for physical ailments (or at least, they are according to a number of doctors who I've spoken to about this), so they rarely will look for a food intolerance, or even an allergy unless you have hives and anaphylaxis. So in their opinion, you must have IBS, not a problem with a few foods, or with food dyes, etc...

If the IBS waxes and wanes in cycles, it can be a parasite, and the waxing and waning goes along with the parasite's life cycle. But there are numerous tests to look for parasites, so...IBS.



I always assume someone with IBS has symptoms, and I know they can be debilitating. I'm glad that the doctors at least came up with something to let OTHER doctors know that a patient's experience was real (since, it seems, they often don't simply trust the patient to tell them that yes, they feel pain and it's real). But I just get very angry on all our behalf over what feels like being rushed through to a diagnosis without enough care.

The doctors tried to do this to my daughter, and continued to say she had IBS made worse by anxiety, but we kept pushing for other testing, with the doctors giving us the stink eye and commenting on unnecessary testing...until she turned out to have celiac disease AND that rare mast cell activation disorder. Then they kind of shut up.

I have met so many people whose doctors slapped the IBS label on them and then essentially left them to deal with it on their own. And hundreds - literally hundreds, because I talk far too much, LOL - who eventually found out that it was something else. With the variety of different strategies that work for folks with the IBS diagnosis, I honestly assume the reason they don't all work is, in large part, because they have different conditions driving the symptoms, too, just like others I've met to eventually found the answer.



So I guess, Cladf? I would honestly think hard about whether to let the doctors just stop with IBS, or to explore further. You deserve more of their time, honestly. Lots of folks here have some ideas that seem good to help look at, really.

And freaking hugs - because it is SO hard to deal with gut pain so frequently. So sympathy, and I hope that you find a way to help your symptoms improve.

And to Shaumom. Your post rocks. Very well-put!

I had severe IBS even did studies with investigational drugs not fda approved, broke ribs the cramps were so bad but to no avail and agree stress is a huge factor. Mine started after my divorse which gave me PTSD ya it was that bad never knew another human could be so reckless and evil. Honestly I had to quit drinking alcohol, went on a high protein diet, train like an athlete and have a 5 min only rule around my X-wife. Now in my opinion I have no IBS and thank god everyday as its the worst thing a human can go through!! I so feel for all of you I wish I could help believe me I know the low selfesteam moments all to well but it keeps me on my new life style everyday!!

I struggled for 15 years with what I thought was IBS. Constant diarrhea. I had to be near a bathroom at all times. Sometimes I would just live in the bathroom. I did every elimination diet on earth. Then, I got a kidney stone. My doctor said no more calcium pills. No more cheese. (I miss the cheese.) But I kept taking the magnesium that helps calcium into your bones. One day I ran out of magnesium. Guess what happened next? I got better.

My heart breaks for people with IBS. I know that doctors have no idea what causes your problems, but hopefully you can find something that will help you.

I have 2 friends who have been on low FODMAPS diets for their IBS.The first had extensive testing to rule out Crohns, coeliac and ulcerative colitis first, and I think this is important before tackling diet. She did low FODMAPS under the guidance of a dietician, followed the diet for 8 weeks or more, then reintroduced individual foods each week as challenges (same amount, 3 days running to see if there was a reaction). She lost weight during the elimination phase, but ultimately has been able to identify that wheat is a major trigger for her (not gluten, as above poster has also indicated), and garlic and onion are also not ideal for her. The other just had the low FODMAPS suggested by her GP, but has struggled to stay on it for more than a week. I do think it's worth investigating if you have IBS, but I would also seek out a qualified dietician to assist.

Cut out processed/ deep fried anything. HUGE difference for me. And lost 10 lbs in five weeks. Of course, weight loss slowed way down after those first 10 lbs. but felt so much better....
Good luck !