Irritable Bowel Syndrome Message Boards | Still no diagnosis, still sick and getting worse -- help! (long post)

Hi,
I've been posting to this forum occasionally for about a year and a half. I really appreciate the positive approach and the supportive environment here. I'm pretty frustrated at this point, and I could use some feedback.

For the past 18 months, I have had chronic D. Prior to that time, I was mildly C, with occasional bouts of D that would last a couple of weeks, then go away. Usually during these times I'd go on a version of Heather's diet - without knowing at the time that's what I was doing!

I should also mention that I am gluten intolerant, and sometimes I'd have a flare-up due to some hidden gluten that had crept into my diet. I have been thoroughly tested for celiac disease, and results have all been negative. I am very careful about gluten nonetheless.

In the summer of 2003 (I can remember the exact day!), I started having D everyday. Dietary changes made no difference. I discovered Heather's book at that time, and I started following it carefully. It made a lot of sense to me since I'd done a version of it during previous flares, and it worked. I couldn't then (and still can't) tolerate fiber supplements, but I added soluble fiber foods to my diet, and avoided all the triggers. Nothing helped.

I found out a few months after this attack started that I had b. hominis, a protozoa that's common and not considered to be a big problem. I was treated for it and apparently got rid of it. I felt better after taking the antibiotics--for a couple of weeks. Then I got sick again. I have had chronic D ever since--except for when I've been on antibiotics.

When this started, I would have an occasional "normal" day, but I have gotten much worse. I am now sick every single day. I have been on the diet for more than a year, and it doesn't seem to make a difference.

I had never been diagnosed definitively with IBS. My GI doc had me go through several tests over the past year, because he suspected Crohn's. I just got the final test results, and he has completely ruled out Crohn's. I am truly thankful for that! But the downside is that I remain undiagnosed. The GI doc says that at this point he can't give any diagnosis other than IBS, although even he feels my symptoms aren't completely IBS-like (because diet doesn't help, fiber supplements don't help, the length of this "flare-up" is unusual, I feel better when I'm on antibiotics, I feel better when I don't eat much, etc.).

My homeopathic MD has also had me tested for various things, and I'm still waiting on a few results for such things as food allergies, dysbiosis, parasites, pancreatic insufficiency, etc. He feels I could have bacterial overgrowth and possible candida problems.

I've been researching and considering the Specific Carbohydrate Diet, because it addresses the problem of bacterial overgrowth; however, it is in complete opposition to the IBS diet, so I'm still a little skeptical. I am also considering an anti-candida diet, but it also removes most of the common soluble fiber foods that I eat.

I'm interested to know from others:
- Have you been mostly C then suddenly changed to D?
- Have you had a D attack that has lasted more than a year?
- What has worked for you in getting the D under control--in addition to the IBS diet?
- Is it possible that I had mild IBS for years, and then it suddenly got worse?

And anything else that might be helpful. I'm really at my wits' end with this. I don't feel that medical doctors are very helpful when they can't find an exact diagnosis. I've tried to continue my life as usual, but it's really been draining. The quality of life is affected by the constant sick feeling and never knowing if I'm going to feel well enough to participate in planned activities.

Thanks for any and all help. I appreciate your time.

Judithg

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