A little too much information.
Here is the short version of my IBS story, and how I helped myself get better. Be warned. there are some “gross” or indelicate details below. I’m telling it like it was, because my IBS story may help you with yours. If you’re squeamish, TURN BACK NOW! :)
When I first got IBS I had no idea what it was, or what might be causing it. I had more and more trouble with my bowels, such as major cramping, abdominal pain and diarrhea.
I’d had the stomach flu over the years but this was different. Diarrhea and cramping kept coming back every few days!
Any of this sounding familiar yet?
Then there was the really strong smell when I used the toilet. Why was that happening? And why was I tired all the time? Why was I sometimes brutally constipated only to have diarrhea a few days later?
All of this was terribly embarrassing for a newly married man in his late twenties!
Because my IBS symptoms came on slowly, (and because I’m a typical guy when it comes to doctors ;), it took me years of suffering before I started looking for help.
Looking for help, FINALLY!
I visited some doctors, and a gastroenterologist, and had all the tests. But the doctors couldn’t find anything.
The gastroenterologist diagnosed me with irritable bowel syndrome, but said that was just a catch all for problems that don’t seem to have a cause.
As my IBS kept getting worse, I got desperate. I decided that if there was nothing physically wrong with me (like the doctors said), it must be something I was eating.
Eliminating my IBS… With an elimination diet.
I decided to try an elimination diet to see if I could find out what was causing my IBS symptoms. I built a list from books and Internet resources and put together a food elimination diet.
I stopped eating all the foods that are most likely to cause either food allergies or food sensitivities.
Junk food’s revenge!
At first I felt terrible due to withdrawal from things like caffeine, sugar and junk food. I admit I was miserable, but I’m stubborn so I kept at it.
The withdrawal passed after about a week, and in two or three weeks my bowels got much better. The cramping and diarrhea subsided, and I had more energy than I’d had in a long time.
I still “fall off the wagon” and eat things I know I shouldn’t, but I get sick pretty quickly, and realize it’s not worth it.
Problems I didn’t know I had…
Something unexpected happened during my recovery. When I stopped eating foods that I was sensitive to, I noticed that other strange symptoms disappeared.
Over time I had developed really strong body odor, bad dandruff and a flaky crust between my eyes, and in my ears. I also had problems concentrating and felt like I was in a fog sometimes.
It turned out this was all connected to food sensitivities. The same food sensitivities that had been making my IBS MUCH WORSE!
After eliminating some foods from my diet and making some lifestyle changes all those strange symptoms disappeared!
Losing weight (and finding it again).
As a bonus, I lost 50 pounds! (Don’t worry though, I found 25 pounds again without even looking for it, once I figured out what I could eat ;). I’m back to about 15 pounds overweight.
I also lost a bunch of foods that were making me really sick. Gluten (a protein found in wheat and other grains) and dairy make me very ill. My bowels are also very sensitive to alcohol.
It was hard to get these out of my diet (I was a junk food junkie and also enjoyed a beer or glass of wine with dinner). I had to make some other lifestyle changes as well, and sometimes the world didn’t seem fair.
But getting rid of the misery I described above, made it VERY worth while.
Now it’s your turn.
Many people with IBS have food sensitivities and don’t know it. You could be one of them. If you are, then a food elimination diet might help you find the foods that are making you sick!
I just wanted to say how informative your site is! It’s nice to be able to read something that is in plain English and not filled with all sorts of words you would have to have a PhD to understand! I am having a lot of the symptoms that you had and am callin my doc right now to set an appointment. Thanks for all the info!
Thanks so much for the kind words Misty. It came at the perfect time. I haven’t been as motivated to keep this thing going lately, but knowing that even one person found it useful makes it worthwhile. I wish you the best, and hope you find an easy answer for your IBS symptoms Sincerely, Shawn
Shawn – I mentioned fructose malabsorption elsewhere on this site but you also might like to look into taking Rafaximin which is shortly to be approved by the FDA for use in IBS-D as it has had very good results in its trials.
The other symptoms you described sound like candidiasis.
Good like.
Thanks for the tip. I’ll look into it.
Shawn
Hi Shawn, I just looked up “what is wheat sensitivy” and found you. You have so much information here and your story sounds like mine in so many ways. I’m 60!!! (feel like 35…) and only now found out that I have gluten sensitivity and am dealing with it, and it’s changed my life. I was told many years ago that I have IBS, which I figured was just another way of saying: You have a sensitive stomach and no one knows why and there’s nothing that can be done about it. Then about 10 years ago, I did a test for lactose intolerance and it turned out positive. So, I thought, cottage cheese is the culprit! But still I suffered from (pardon me) stinky gas and bloating. It was often very embarrassing.
Recently someone recommended that I consult with a man who has a machine called Bicom and he tests you for food sensitivities. It was weird, but at the end he gave me a long list of things to avoid: all gluten, all dairy including goat, sugar, coffee, tea, honey, chocolate, peanuts …. well for the first few days I felt like a little girl who had all her candy taken away from her. My favorite breakfast had always been good coffe with really good bread and butter. But I decided that since I paid this guy so much to test me, I was going to take it seriously for a month. I decided to find alternatives: when I wanted something sweet I have a date (or 2) or some halva. Since weight has always been an issue with me, I had been avoiding rice, potatoes and sweet potatoes. I also avoided broccoli, cabbage and other “gassy” vegetables thinking they were the
problem. Now, although this way of eating requires a little more work, I’m enjoying it so much and I feel I’m eating “real”
food. I make lots of soups and stews, eat rice and potatoes and all vegetables. I don’t miss bread anymore. In fact yesterday at a restaurant I had a salad and they had gluten-free rolls and I had one – it was awful. I know that by not eating bread and baked goods I’m avoiding lots of sugar and margarine and all sorts of unhealthy things and my weight has come down almost effortlessly. I snack on almond, raisins etc. I find that I can even eat some dairy now and it doesn’t bother me.
So all in all I’m really pleased with the way I’m eating now and the way I feel and I’m not looking for bread substitutes.
Keep up the good work Shawn.
Best wishes,
Shani
Shani, there is so much important information you put in your comment that it should be it’s own page. I don’t know if there is a way to do that though. I’m going to find out more about this Bicom machine and write about it, and hopefully have such a test! Thank you for your incredibly important contribution. I’m sure other people will read it and be helped by it. I know it has helped me.
Especially the keep up the good work part :). I sometimes have trouble finding the time to research and write all this. people like you make me realize I can’t give up.
Thanks so much Shani.
Shawn
I have the very problems you talk about. I’ve had them for several years. I have also eliminated gluten and dairy which helped alot. I supplement with probiotics and digestive enzymes which also help. I still find that I have problem foods that I can add to my list. As with one of the other posts, I too suspect candida. I’ve tried cleanses, but they make me very sick. I have recently seen a MD of Chineese medicine that works with homeopatic remedies and nutrition. Things are starting out pretty well so far. He has a refreshing way of looking at the health of the body compared to getting nowhere with the gastroenterologist. Western medicine is completely in the dark with this disorder.
Thanks for sharing that information Teresa. Let me know how you make out if you think of it. I certainly agree that western medicine is missing something.
All the best, Shawn
Shawn, I have recently found your site and commented on the page about wheat sensitivity as that is what I was researching at the time. I hadn’t bothered to read your IBS story as I don’t have any digestive symptoms to speak of. What I do have and what has baffled my doctors for a long time is skin irritations. When I saw you mention your eyes and ears I immediately related to that as I have had that and scalp irritations as well and mysterious rashes and irritations that come and go in other areas. My naturopath suggested a food sensitivity test and I had one last year and one again this year. Both came back positive for wheat and gluten. I sometimes don’t take my diet very seriously as well, it’s only a skin rash, and many others have much worse symptoms. However, skin irritations can be painful, unsightly and as in my case have been a chronic annoyance and one without a clear cause. I’m hoping that with renewed determination to clean up my diet I can rid myself of this condition once and for all. I wonder how long it will take…
Thanks for listening and I hope people can understand that not all food sensitivities result in bowel and digestive issues. They can take on many forms depending on the individual.
Thank you for letting me know more about your story Patty.
I know your words will help others.
And Patty thank you for reminding me that I too have to follow up on what I’m telling others about. :)
Shawn,
Thank you for this website & for sharing your story. I’ve struggles with IBS issues since I got a parasite from Mexico 3 years ago. Initially, a parasite cleanse cleared it up. But, a few weeks later, the issues started again. I finally decided to quite caffeine to see if that would help. I’ve been off caffeine now for almost 2 weeks. That has given me more energy, has gotten ride of the mood roller-coaster I was on & I’ve been sleeping more soundly than ever. But, I’ve still struggling with diarrhea (yuck!). After readying through your site, I finally got motivated to keep a food diary to figure out what else is causing this. I’m suspecting dairy or sugar. This is going to be so hard, but so worth it in the end.
Thanks again!
Jen, thank you for sharing YOUR story as well. Kicking the caffeine can be hard. I’m glad you found some motivation in my site. It’s a helpful reminder that this is worth doing. I wish you the best of luck with your journal.
Let the rest of us know how you make out!
Regards,
Shawn
When I was FINALLY (after 25 years of D) diagnosed with Celiac Disease, I was amazed to learn that roughly 95% of folks who have Celiac Disease have been undiagnosed or misdiagnosed. Isn’t that incredible? 95%!
Though I wish it had not taken so long for me to be properly diagnosed (average I believe is +11 years before proper diagnosis), I was glad to finally have one piece of the puzzle solved.
Unfortunately, the gluten free diet was high-carbohydrate and lead me to trek down the SIBO road and that’s where I’m living now, with chronic constipation (didn’t even know what it was for a long time because I’d only had D all my life…).
It seems that Celiac Disease and gluten sensitivity (as well as the lesser-known gluten ataxia, which I also have http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html) are becoming more easily recognized within the general medical community, however. So that’s the good news.
If you ever suspect you may have a gluten problem…and even if you don’t!…please get tested. At least with Celiac Disease, we can stop the progression through a strict gluten free diet. So many folks with other diseases wish it was that easy (I’m not saying it’s EASY…believe me!…but if cancer could be cured by nixing the gluten, who wouldn’t?!).
Gutsy Girl
Thanks Gutsy Girl for your comments here and elsewhere on the sight. I look forward to seeing more information from you! All the best. Shawn
Shawn- Wow, your story sounds nearly identical to mine. I think I’ve finally put all the pieces together. A Chinese medicine doctor told me years ago to get rid of grains. When I did that, the flaky skin on the sides of my nose and in my ears went away. Dandruff cleared up as well. I got rid of caffeinne last year and now drink herbal teas instead of coffee. My mood seemed to really improve since that change. The last piece I recently discovered was something I did to myself. :) Being of Scottish descent, I thought I should know a thing or two about whisky. So a few years back I started trying different whiskys and single malt scotch. Looking back, my loose stools and diarrhea had gradually gotten worse. I’ve been on every elemination diet imaginable – except eliminating the scotch. I went on a business trip in January for a week and got out of my scotch habit and guess what cleared up? Yup. So I’ve figured out now in this body I can’t have caffeine, grains, or alcohol. Casein makes my seasonal allergies worse so I avoid dairy with protein in it. Luckily, I can have whole cream in my decaf coffee. I’m 45 now and it’s taken years to figure all of this out but I think I’m finally there. The worst part is the social aspect. In-laws, spouses, friends, tend to get offended that you can’t eat “just one home-made cookie” or “just have a beer” for the superbowl or have an after dinner espresso from their new espresso machine. I used to make exceptions, but it’s just not worth it to me when I’m in the bathroom the next day.
Great website. It’s good to know others are going through the same things. Well, it’s not good to know that others are suffering, I wish they weren’t. :)
Rick thanks for sharing your story. It helps each of us to know we’re not singled out! Yes your story and mine DO sound very similar. I particularly appreciate the part about relatives and friends not understanding. Thanks for the kind words about my site too!
All the best. Shawn