another desperate plea for help/suggestions
#284630 - 09/30/06 09:56 AM
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So I've had chronic D for just over 4 years now, and have been "diagnosed" with IBS for about the past 3 of those years (although I still wonder about the possibility of Candidensis or whatever, and lately read about SIBO, and wonder if the tests keep missing a gluten intolerance). I've had most of the available tests like colonoscopy, endoscopy, RAST allergy test, fecal samples, etc. I've tried lots of mixtures with diets as I've read books like Breaking the Viscious Cycle, What your doctor may not tell you about IBS, and lastly, Heather's book, which sounded the most promising.
I've now been adhering to Heather's diet fairly well for about a month or more, very strictly for a few weeks. I'm also on about day 14 of the hypnotherapy tapes. So far I'm not finding any relief, but I'm in a lucky situation where I am a graduate from college and being fed and housed by my parents, and thus have room for experimentation to find a solution.
I started at 2.5g Acacia fiber 11 days ago (but had previously been taking smaller amounts of Metamucil caps) and am now at 6.05g. I felt that this was a gradual increase according to Heather's advice, but maybe someone thinks otherwise? Other than that, I've been taking Caltrate, PB8 probiotics, Spirulina, Peppermint Caps, Peppermint and Fennel Tea, and a Multivitamin every day for quite a while. Keeping a log of consumed food and reactions during the days, I've been unable to pinpoint much of any problem foods and am pretty desperate for advice from fellow sufferers.
My base diet consists of quinoa in the morning, boiled chicken breast, white jasmine rice, white rice bread, and boiled carrots for lunch and dinner. I've admittedly not been eating much greens for fear of attacks. Ocassionally tried small amounts of peas and soybeans with Beano and unsure of the outcome. I also fairly regularly eat boiled turkey, canned tuna in water, baked potatoes w/out skin, yams w/out skin, sourdough bread, rice cakes, fat free saltines, organic no additivies applesauce, bananas, butternut and acorn squash. Less occassionally eat oatmeal, Whole Foods vanilla rice milk, Whole Foods rice puff cereal. I put Agave nectar on many things for sweet flavor, and rarely use other spices. If I do use others, it's very small amounts of pepper, lemon pepper, garlic salt, and cinnamon (no, not all together!). I've been using Lomotil every morning to prevent the diarrhea, and it works OK. I used to take lots of Imodium, and still do occassionally to supplement the Lomotil. I've also got a bottle of nortriptyline on my counter that I was going to start on, but I would like to hold off until I decide how much this diet and the hypnotherapy will do for me.
Anyway, apologies for the very long post, but I felt the need to be comprehensive in order not to waste peoples' time on responses. Any suggestions would be greatly appreciated! Thanks.
Oh yeah, I also mountain bike a lot with heavy exertion, and for long periods of time, and I'm not sure how this effects my symptoms, although it's of course not the underlying cause. So I get plenty of exercise between that and pushups and situps.
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Dash
IBS-D(Tenacious D)
Edited by arctic masticator (09/30/06 10:15 AM)
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So are you feeling better at all on Heather's diet? Are the grams of acacia you are quoting the amount of acacia or the amount of soluble fiber?
Oh, and did you start out with the Break the Cycle diet?
I'm not a D, but I do know there are plenty of folks who took months to stabilize. However, I would hope you would start getting some hints of improvement by now....
--AC
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That amused me. 
Thanks for being thorough! It really does help, when we read posts, to know what you're doing, what you've tried, etc.
My short answer is this: give it more time.
You're doing everything perfectly, but you haven't gotten to a point yet where you can honestly expect to see stability. I know it's implied here and there that you should start to feel better quickly, but unfortunately, that's not always the case. I didn't start to see improvement till I'd been on the diet for close to 6 months, religiously, without cheating, and after that, it was another 8 months or so before I considered myself "stable". I know it's hard, but you just have to hang in there and be patient.
You've increased the acacia at a good rate, as far as I can tell. However, you're not yet at a dosage that will make much of a difference. You're getting close, though!  Everyone's different, but I noticed improvement once I hit the 8g mark. Remember that the goal is 12-15g. Some people need even more than that.
If you're still not 100% on your diagnosis - and it sounds like you aren't, as there's a few tests you haven't had - pressure your doctor for those tests. Technically, you don't have an IBS diagnosis until EVERYTHING else is ruled out, including gluten intolerance. You can experiment a little, and cut gluten out of your diet now - see how you feel - but I would still get tested. (Be aware that you have to have been eating gluten to get the test done, so don't cut it out of your diet if you plan on getting tested.)
Good luck, and hang in there!
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I think those amounts are the grams of soluble fiber. I started at 1 teaspoon/day and am now at 2.5 teaspoons/day of Acacia powder. I definitely feel better than when I was eating red meats and other fats and compensating for it with Imodium. I figured the fats problem out on my own a long time ago though, and I've still got an chronic problem, but I reckon there might be a slow improvement.
I made a half-hearted attempt at doing the Viscious Cycle diet back in college, but it was really hard for me to do it because I snacked a lot in class and when I went biking (I'm always hungry! so I eat a lot of food), and most of the food it suggested, I believe, was fresh food that wasn't easily toted around. I could be wrong though, I've forgotten a lot of what was in that diet. In any case, I thought that by eating only White Rice and Chicken and occassionally boiled carrots, which all seemed to be very safe foods, that the diarrhea would go away until I introduced a food that didn't work well. That doesn't appear to be the case though.
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Dash
IBS-D(Tenacious D)
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Hey, thanks for the responses and support Casey and AC. I've actually had gluten tests at least twice now, maybe three times. I've been told though that many people with Celiac's go misdiagnosed for a long time, and then it shows up on one of the same tests they'd undergone before, but that had previously showed negative! I doubt that's my problem, but I've always kept it in the back of my mind.
I figured I probably needed more time, but it helps to hear someone actually say it. Also, you have any suggestions on the SIBO? The symptoms look so similar to IBS, and some sites say that it is a cause of IBS, or in conjunction with IBS. Looks like there's a hydrogen test, and a more severe surgical test, both of which don't sound highly trusted for their results.
I'll keep chuggin away at this diet though. Any suggestions on green vegetables to slowly introduce? I'm worried about my vitamins and nutrients.
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Dash
IBS-D(Tenacious D)
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I'm not at all familiar with SIBO - I don't even know what it is. So I'm not going to misguide you there. Hopefully someone else will come along who knows more about it.
When I was introducing veggies back in, green peas and spinach were the easiest. Peas seem to be almost universally easy, whereas people have mixed reactions about spinach. After I could handle those, I went up to green beans. In any case, do eat soluble fiber first, and start with small amounts of the vegetables. Don't be discouraged if you have a less-than-pleasant reaction; give it a couple days, and try again. As you get more stable, the process gets a lot easier.
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This is Heather's Break the Cycle Diet:
http://www.helpforibs.com/diet/faq.asp#break_cycle
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Re: SIBO
#284707 - 09/30/06 08:46 PM
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Blondie13
Reged: 02/28/06
Posts: 641
Loc: Sheffield, England
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While I don't know much about it personally, it's been 'making waves' over here (UK) for some time as regards IBS. Whilst not the most in-depth article (it wasn't meant to be) the following is a useful quick explanation of what it entails, and a book recommendation if it's something you want to find out more about. The site I'm linking you to is www.ibstales.com, which is ran by Sophie, a long-term IBS sufferer who is very well respected in the UK, and keeps a very interesting, intelligent and funny blog. Just thought I'd give her a plug since I was linking to her article!
Link: http://www.ibstales.com/blog/small_intestinal_bacteria_overgrowth.html (sorry couldn't do it properly, pop-ups not working for some reason...  )
HTH! 
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http://ibsblondie13.blogspot.com/
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Re: SIBO
#284712 - 09/30/06 09:39 PM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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Generally speaking SIBO is treated with antibiotics. And to the best of my knowledge it is never eradicated. It requires long term antibiotic treatment which has serious risks.
However, there appears to be a school of thought that the food supply to the SIBO bugs could be things like fructose, lactose, glactose and IF. They produce gases and short chained fatty acids from these foods that stimulate the gut. If you can control the food supply you can control the bug population and hence manage SIBO. I prefer this option 
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Casey,
I'm confused about this post but also somewhat encouraged. I just want to make sure I'm understanding you correctly. When you started Heather's Diet there wasn't an immediate "I'm starting to feel better" feeling for you? It took 6 months before your system started to accept it? I'm getting ready to quit my job and start adding foods into my diet (I've been eating bread and plain baked potatoes for about 18 months now). So now that I see your post and realize it took 6 months for your system to adjust to the diet it gives me a different outlook on it. If the diet still gives me D and pain do I just grin and bear it and know that my tummy will adjust or should I take that as a sign that those are things I shouldn't be eating?
~Courtney
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Courtney (IBS-D)
"Do your part to live in peace with everyone, as much as possible." Romans 12:18
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No, there was definitely no immediate "better" feeling for me. I should add that I have severe anxiety problems - my biggest IBS trigger - and so that was a factor in things taking so long to work. (The general principles of the diet also involve a complete lifestyle change... the diet won't work well alone if you don't take care of anxiety/stress/depression problems also, and vice versa.)
I think I'm a little confused by your post. You've been doing the diet for 18 months? Or are you saying that you've been unable to eat much of anything for that long because of IBS? If you've been following the diet, without cheating, for 18 months - that's a darn long time - I would say that it's not working for you. However... I'll stress the usual things here... no cheating, adding more foods back into your diet, getting exercise, managing stress/anxiety/etc... it's a whole package. Missing one of those elements could screw up your efforts royally.
I'll explain a little more what my experience was like, and you can see if anything compares. I started the diet in May 2004. The diet alone didn't make me feel immediately better, but I definitely did not feel any worse, either. It wasn't a matter of my body "accepting" it so much as things were just SO irritated and flaring up that it took a while for my system to calm down.
The D did start to slow down after a couple months, come to think of it, but I was still so nauseous and crampy. Once I started on medication for my anxiety problems AND started adding foods beyond the "breaking the cycle" part of the diet, things started to slowly get better. Emphasis on slowly! I was still having attacks every week for a while.
I considered myself stable last July, when I had finally bumped down to 2 or 3 attacks a month. I figured that's as good as I was going to get.  Now I have *maybe* 1 a month, if that - usually hormone-related.
I don't know if any of this babbling is helpful! Not knowing exactly what you meant by the 18 months, I can't really answer your "grin and bear it" question. To some extent, yes, you do have to do that - when you're in full flare-up mode, EVERYTHING will freak out your guts, and you just have to keep eating well and have faith that, sooner or later, things will calm down. On the other hand, if a food in particular seems to bother you every single time you eat it, that would be a good indicator that it's a trigger food for you.
I'm sorry if this is confusing. I should have just waited for you to clarify what you meant before I took off rambling! LOL!!
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