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Lisa

From Annies Mailbox - Www.ibsgroup.org

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I went on to their site that the old "Ann Landers -the new Annie's Mailbox" because she had a question about and 18 year old with IBS and they posted the above website for an IBS group and chat line.

I visited that site and it was "de-ja-vue"

It was totally sad for me and I wanted to bring everyone on that site back to ours. They had problems with beer, oat, wheat.........well, you know the whole list.

I did not register as a member, but it makes me so sad that there are soooo many, as we were out there, that haven't a clue about what is making them sick.

I know that Celiac is not the answer to all issues, but with IBS, it can be for a lot.

Others may find it interesting to check out their site. If you do, grab a few and bring them home. :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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This is like 2 years old I know, but being a long time veteran of IBS and ibsgroup.org, I would highly suggest those people at least try a gluten free diet. Only a few weeks of it has been a huge success for me. When I first joined ibsgroup.org, probably about 7+ years ago (?), I was just swamped with all sort of solutions, from enzymes to herbs, people pushing hypnotherapy tapes, just lots and lots of stuff. A lot of posts about "just living with it" without really looking for a solution. And, if I may say, god awful moderation (I don't need to drag their drama here, but in comparison, it's night vs. day).

It is a very sad group to read, because a lot of people seem to have given up, or spent a lot of money on herbs and homeopathic medicines, usually because of some aversion to "big pharma." Rx can help in some cases, but gluten free is a hard sell there for some reason. I know one solution doesn't fit everyone, but it's basically free to try, and a person can see improvements in a fairly short time.

I have two major regrets... first and foremost is that I did not find THIS board first. The second would be going about the treatment process all backwards with the advice I was given there, I tried probiotics, herbs, magic potions, hypno tapes, psychiatrists.. all on the suggestions of people there. At the time I joined, no one was saying that you can use RX meds to get your symptoms under control immediately and no one ever mentioned trying a gluten free diet to me.

They should advertise you far more than you should advertise them. It's terrible, I went there at about 20, and that was almost 10 years ago, and all that time, I could have simply been avoiding gluten and been functional, but I wasted a lot of time, money and years on bad advice. I feel very sorry every time I read a post there and it is from a very young person or someone in their teens and they feel like their life is over, and they still get, what I consider, backwards advice. They leave with 50 different options to try, and no real solidly backed ones. Not the ones that could be life altering. Probiotics, for instance, have a place, but I've never tried one that controlled the symptoms of my IBS. And I have tried just about every one they suggested.

I think the tried and true methods should be recommended to get someone functional, and at the same time go gluten/casein free. Considering IBS means nothing, it is a diagnosis of "I don't know" and all the research points to some sort of unknown immune connection, dietary constraints would seem to be the first step. I can understand if you need to go to work, then you need medicine immediately so you can keep your job... etc. But after that, intolerances and sensitivities should be the first thing that is looked for. But it's really not, and not suggested. Even I had to be even handed, in the past when I have just suggested one course of action, they've gotten quite upset. If the hypno tapes don't get a mention or if you suggest something else might work better, you get moderated.

I didn't even know the word casein until I came to this forum. It has really been illuminating, and I have to give this place credit for helping me in just a few short posts, when that site mostly just burnt my time, money and goodwill. (Again, not getting into the goodwill, but I saw some moderator decisions that really upset me, I'm not referring to the times I've been moderated. I just saw a few good people who were quite sick driven away, let's just say "support group" is a misnomer, "fight club" would be a better fit.)

I apologize if that is too negative or something, but it's my first hand experience there for many, MANY years, and I completely know what you mean. I posted this forum there a few times and had been recommending the gluten free diet, a few people said they would try. I think it has the potential to help far more than a lot of the other suggestions, which just treat symptoms, but not the cause. (i.e. fiber/calcium to prevent D, instead of finding out why your colon is dumping liquid.... not that it can't be a useful treatment, but it's not a real cause, just like IBS is not a real diagnosis, it's just exclusionary).

Anyway, I just wanted to get that out, a lot of frustration with that place, and still in awe of the people here, and how well it's moderated, and all the concise accurate information people have been able to provide here on intolerances of many kinds.

Thank you again.

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It is frustrating because IBS is really a dead end "diagnosis"-- it is just a convenient label for a group of symptoms doctors "can't explain." I was diagnosed with it at 17 and finally diagnosed as celiac at 41.

I say dead end "diagnosis" because doctors tend not to do further testing once they see it on the record and they tend to attribute everything to it. And there are two dangerous myths surrounding IBS-- one is that it doesn't seem to damage your helalth in the long run and two, that there is "nothing you can do about it." I am tempted to write in to Sophie's IBS forum (the number one IBS spot on google)and tell my story, but I know that when I was sick with it, I really didn't want to hear it was my diet. Plus gluten-free is tricky in the sense that you need quite an education in labels to understand if you are really gluten-free or not.

I can't tell you how many times I heard the latter. I am now CF too and I love this forum. Not only did I realize I was not alone in my suffering, but that many smart people had figured out more about this disease than I ever dreamed possible. And I have benefited.

Every gluten-free day is a blessing for me now. And I feel like it was a miracle I was finally diagnosed. So much so that going gluten-free was not a hardship at all. It meant I got my life back (okay-- a few organs lighter, but basically it is back.) And it meant that I finally had control over what I thought was uncontrollable.

Lisa

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I visited that site and it was "de-ja-vue"

It was totally sad for me and I wanted to bring everyone on that site back to ours. They had problems with beer, oat, wheat.........well, you know the whole list.

Oh also, can you go back in time to about 2006, and send me a PM telling me that I should start avoiding gluten. =) Hehehe, actually, since you are going back already, go back to about 1999. =)

I know that Celiac is not the answer to all issues, but with IBS, it can be for a lot.

Others may find it interesting to check out their site. If you do, grab a few and bring them home. :)

Yes, this advice is still more than valid. It isn't the answer to everything, but if you've got the time, do spread the word. It's relatively unknown there from what I have experienced. They need someone saying.. "Try it! It is FREE. TRY IT FOR TWO WEEKS." If it doesn't work... ok, keep looking, but if it does, you will feel 10x better in no time.

Lisa16, were you ever registered there? The name sounds familiar, the 16 and everything. I'm glad you found something, that is a very long time to suffer with IBS. I hope if I can stay gluten-free for long enough, I'll be back to normal, or very close, already well on the way. Does the anxiety eventually come off? Do you one day wake up and realize you feel free? Or it is a gradual procession?

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Hi Coldnight!

My pain was gone after 1 day of gluten free-- that pain that wakes you early in the morning and keeps you up until you start getting sick first thing in the morning. The D took about 4 days to go away, but it went away for good (barring an accident). It took me quite a while to figure things out too-- I made some mistakes during the first few days and weeks. Now, at about a year out, I rarely get glutened and if I do it is from eating out or cross contamination or some sort.

Hang in there.

I never registered for the annie's mailbox thing, but I was on Sophie's site for awhile. I just left a message there urging people to get tested or to try the diet.

Lisa

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Hi Coldnight!

My pain was gone after 1 day of gluten free-- that pain that wakes you early in the morning and keeps you up until you start getting sick first thing in the morning. The D took about 4 days to go away, but it went away for good (barring an accident). It took me quite a while to figure things out too-- I made some mistakes during the first few days and weeks. Now, at about a year out, I rarely get glutened and if I do it is from eating out or cross contamination or some sort.

Hang in there.

I never registered for the annie's mailbox thing, but I was on Sophie's site for awhile. I just left a message there urging people to get tested or to try the diet.

Lisa

Awesome, I'm not diagnosed, but I wake up in the morning and there's no running for the bathroom... which is still bizarre to me! It took about the same amount of time for D to leave me, 4-5 days, and as long as I avoid gluten, it seems to keep working. I'm glad it has worked well for you, I hope you are out enjoying life! I intend to. =) I've missed way too many things.

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