Hi,
I haven't posted in a long, long while, but I could use some feedback on why I can't get better--in fact, I've gotten worse! It's just so frustrating!!
A year ago, I suddenly switched from years of very moderate IBS-C (with occasional bouts of D) to mostly IBS-D with lots of other symptoms--pain, spasms, bloating, gas, a feeling that I constantly need to have a bm. It was a surprise, because I had been doing really well for about a year, with no D attacks, good regularity, etc.
Because I have had moderate IBS symptoms for a long time, and because I have gluten intolerance, I immediately tried to adjust my diet--make sure I wasn't eating hidden gluten and avoiding other known triggers. I found this website, and it made a lot of sense to me (I had already identified a lot of the foods as triggers for me, and I knew that eating such things as rice, potatoes, etc. had worked for me in the past). So I started following the diet as carefully as I could. But I just couldn't get stabilized. I was also unable to tolerate soluble fiber supplements.
After a couple of months, I had some tests done and found I had a parasitic infection (b. hominus), which is found in about 20% of the population, and most don't even have symptoms from it. Doctors often don't bother treating it at all. Since I had some symptoms, the doctor put me on antibiotics. After finishing them, I felt really good for about a week. Then the symptoms returned. I went on a stronger antibiotic and started probiotics as well. After I did that, testing showed that the b. hominus was gone. I felt better (though not completely cured)--for a few weeks. During this time I was continuing to try various fiber supplements, staying on them for a few weeks and gradually increasing as directed. First I discovered that Citrucel had gluten in it, so I switched to Benefiber, but even at very low doses it caused horrible bloating. Same with a rice-based fiber I tried, as well as with Equilactin and Acacia (though Equilactin was not as bad as the others).
Eventually my symptoms returned in full force, despite fairly strict adherence to the diet. My GI doc and my homeopathic MD agreed that I should try an elimination diet to see if I had developed additional food intolerances. I started with two weeks of eliminating anything that I normally ate more than twice a week. I immediately felt better. So I figured there must be something in my diet that was causing the problem. I slowly added foods back in, and I identified some other potential intolerances. I continued this for a few months, and as my diet went back to normal (while maintaining IBS diet guidelines), I began to have problems again. But I couldn't identify any particular food that was causing this. I tried reverting to the first stage of the elimination diet, but I didn't get better this time. I just continued to get worse. By the early summer I was constantly sick--bad enough that I often had to stay home or even in bed. I was also tested for celiac disease, but the results were negative.
My GI recommended a colonoscopy, as he was beginning to suspect Crohn's disease and I hadn't had a colonscopy for about 6 years. I just had the test, and everything looks normal, so the doctor is back to diagnosing my problem as IBS.
I am truly thankful not to have Crohn's, but I am also frustrated that I'm back to the IBS diagnosis--I just don't seem to have found the right combination of diet, supplements, etc. to get it under control. My body reacts to food as though it is allergic to just about everything. I'm not really sure what to eat any more.
One odd thing that happened recently: I had to take antibiotics for another problem, and after 7 days of antibiotics, I felt better. Still had some gas and bloating late in the day, but no spasms during the day, fairly normal bms, etc. While on the antibiotics I was taking a lot of probiotics as well.
I'm sure many of you have had a frustrating time getting stabilized as well. If anyone has any suggestions, I'm open. I just hate to think that the problems that started a year ago are never going to go away! I keep thinking there must be some way through proper diet that I can get this under control!!
Thanks!
Judith
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Help! A whole year of trying to figure out what's wrong! (caution--long post)
