[Bonasta]

I'm new here – not new to gut problems tho...I was diagnosed with Coeliac disease years before the blood test was available – like 25 years ago. My mother had it too. My symptoms are those of IBS-D: no weight loss just uncontrollable D.I have been on a Gluten Free diet since then but lately things have gotten worse. In the early days after diagnosis, and on a GF diet, I'd have one or two softish poos in the morning with some slight flatulence but then everything would be fine for the day. About ten years ago things got worse and after some tests it was found that I was deficient in pancreatic enzyme which I now take with meals. This reduced the flatulence. Over the last 18 months things have slowly gotten really bad. One hour after eating I have uncontrollable D and I have messed myself maybe six times in the last six months. This is not the slight mucus and poo dribble I had become accustomed to but rather 500ml of smelly liquid.I have been re-tested by the specialist (endoscope both ends) who says the Coeliac disease is under control, the pancreatic enzymes are doing the job – my poo has little residual fat - so he says the remaining problem is 'just IBS' and I should try to control it with Loperamide (Imodium) – 'you can take up to 8 a day.' Taking Loperamide certainly stops things but for me it just delays the problem causing a bigger build-up of liquid and an even more painful explosion of diarrhoea.My IBS is getting me, and my family down. The problem is the increasing complete unreliability of my gut – I have no idea what is going to happen when.As I can't eat Wheat, Barley, Rye and Oats (or drink beer) because of the Coeliac disease, and excess fruits are bad because of the IBS-D I really don't know what diets to try. I suspected that I was short on roughage so I tried soluble fibre but that caused more bloating. In order to be able to travel or go out of an evening with any reliability I tend to fast after a light breakfast and then eat in the evening after I have done whatever I have to do that night. This is a serious constraint as my friends like to eat just before the theatre or concert and that is about as bad for me as it can get.I have taken to wearing incontinence pants whenever I leave the house. This is a great confidence booster and helps enormously. However the volume and nature of my accidental poop mean that diapers can do little except stop the poo dribbling down my legs.I realise that my bowels have been making me into something of a recluse – or at least making a simple trip into a major project which, in any case can't start until 2 hours after breakfast to ( hopefully ) clear my gut.I have been reading the web and there seems to be no systematic body of knowledge – try this or try that is not much of a help if a good result is three ruined theatre trips rather than five – particularly with theatre tickets costing what they do nowadays. The information seems to be all anecdotal: 'I solved my my IBS by eating earthworms' or some such. Given the variability of IBS is worse than useless. These latter 'revelationary' cures usually require payment and put me in mind of the promises surrounding the snake oil salesmen of old.Two further points: I wonder if selling supposed cures not based on peer reviewed research is in fact legal – even with the disclaimers that it is advice and not medical fact – there is still an intention to be taken as a cure. As I understand the law it is the intention of the action not the letter of the text that overrides. Secondly it would be a great idea if this board were to have a section at the top level – perhaps called 'Snake Oil' where the ideas being sold could be dissected. I have no problem with paying $24.99 for a helpful guide if I have some hard statistics to show efficacy.So thanks for reading this and love to you all, sisters and brothers in adversity.

 

[Kathleen M.]

a lot of websites do go over the boundries of what you can advertise dietary supplements as. Occasionally the government finds out about a given ad site and sends a cease and desist letter.http://www.ftc.gov/opa/2001/06/cureall.shtm even has a contact us site where you can report such sites. But a new one pops up for everyone that gets shut down.You might look at the Calcium thread pinned at the top of this forum. While not tested for IBS-D every study with Calcium supplements for anything notes they are constipating.If you need scientific papers Align is a probiotic that actually has been tested for helping with IBS. I think Culturelle and VSL#3 have done IBS tests, but I know they have a lot of tests for a variety of issues.We do have a Medications link at the top for the stuff that has some data for it.Dissecting the latest greatest brand new snake oil that will be replaced with something else once the sales dip...I'm just worried about never getting through everything. Everytime the sales drops from any given thingy the next one pops up. I'm about to lose track of how many miracle fruit juices there are. There is a new one every couple of years.

 

[peaches41]

Is Align called something else in England, do you know?

 

[Kathleen M.]

The Align Brand hasn't crossed the pond, yet, as far as I know (no idea if anyone on ebay may ship that far). There are some UK products that have B. infantis in them. May not be the same strain, but it gets you the same species.

 

[MIRMAK]

You definitely can find Align on ebay which can be delivered to you from USA.

 

[overitnow]

Bonasta,We used to have a member who sold his experiences with Mangosteen Juice under the name of Snakeoil. I'm one of those terribly lucky people. I added a supplement to stop my cholesterol problems and it also slowly stopped my GI problems, to the point that I have been "overitnow" for over 10 years. It is made by Melaleuca, a customer marketed company; but that is hardly my fault. In fact if a customer hadn't told me about his health changes I would never have heard of it--certainly not from my doctor, in spite of the fact that various cardio studies have been reported in journals--as none of them have ever known anyone who uses this approach, and in no case from the manufacturer which does not support these kinds of off-label testimonials. And, because every study needs a "sponsor," no researcher is going to look at this unless it is paid for by the manufacturer. That is what science comes down to in our age of Pharma. Still, after 10 years of the daily horror and disgust from this condition, I feel compelled to keep telling the story. It is not that it will help everyone; but there may be something out there that will work as well for you and maybe it will be the same thing as has worked for me. The one thing I can guarantee is that if you don't try these things you will never know for sure. It just seems self-defeating to complain about your condition and then complain about people who are trying to help.I am 65 next month and blessed to have been able to recover my health and wellness. I did not believe it was possible. Good luck to you.Mark