I see the Mayo nutritionist in person.
After my tests, my Mayo GI initially gave me the Mayo Clinic Fructose Malabsorption Eating Plan and recommended seeing the nutritionist, which I did. She then gave me the FODMAP Eating Plan (20 page booklet). I don't know if it is available online or how you get it if not a patient.
There are no firm rules about which foods you start with or the order but the Plan highly recommends you follow their rules/ recommendations if you want to figure out which foods caused your symptoms. You reintroduce 1 FODMAP group at a time and 1 food at time. My nutritionist gave me the order of FODMAP groups to work. The groups (in the order I'm working) are Galactans, Polyols, Fructans, then Fructose (I don't have an issue with Lactose; if so, they would be a group as well).
Within each group there are a a list of foods. You start at the bottom of the list and work up (from lowest FODMAP to highest). What she has me doing is 1 new food every 3 days. Eat the (last) food on the list for day 1, 2 and 3. If on day 1, I don't feel well then wait until I feel better (maybe 3 days) and then try the next food on the list. I then know that I cannot tolerate (or eat) that food. I can always try again in smaller amounts.
If I can tolerate that food, then I wait a day and start with the next food in the same group. As I work myself 'up' the list for the food group, if I find 2-3 in a row that don't work for me, then I probably won't be able to tolerate anything else higher in that food group list.
Once complete a group, go back to basic diet before starting next group and stop eating foods from the first group. Wait about 3 days before starting the new group. Etc.
It is very tedious, but the whole goal is to figure out what you can eat.
Plus http://www.fooducate.com to get label information of lots of different types of groceries.
And http://www.fodyfoods.com for low fodmap foods you can purchase. They have a really good snack bar (since my old favorite protein bars weren't making my stomach happy!)
Also, for gaining weight there is Nestle ProNourish digestive wellness drink (gluten free, suitable for lactose intolerance, low FODMAP).
Finally got a chance to check out all the links on low FODMAP eating (except for the Mayo eating plans - couldn't find). Unfortunately the items have much more sugar than I can digest. If a person's IBS is caused by something other than fm, or the person has fm on the mild side, these sites would probably work. Recipes had chocolate, salsa, garlic, beans, etc. which don't work for me. But, thanks for your informative e-mail! I may try linking up with a Mayo dietician.
Finally got a chance to check out all the links on low FODMAP eating (except for the Mayo eating plans - couldn't find). Unfortunately the items have much more sugar than I can digest. If a person's IBS is caused by something other than fm, or the person has fm on the mild side, these sites would probably work. Recipes had chocolate, salsa, garlic, beans, etc. which don't work for me. But, thanks for your informative e-mail! I may try linking up with a Mayo dietician.
This is why working with a nutritionist, at least at first, is so important. I have been on a Low FODMAP diet for two months and I am not eating any of the items you mentioned. No garlic, no onions, no chocolate and very little sugar. That is what happened to me at first. I went to the websites, read the food lists, and started to eat stuff that triggered more diarrhea. The diet starts very restrictive and slowly expands to other foods. It is important to follow a certain method for the diet to work. It is not just a matter of reading a list and start eating Low FODMAP foods. I almost gave up on the diet until I went to see the nutritionist and we adopted a method. Can’t emphasize this enough. It is how foods are first eliminated and then very slowly reintroduced. One can’t just randomly eat all the foods that are listed on the FODMAP diet. The diet must be individualized to your needs and specific problem, I.e., CDiff versus SIBO versus FM. It may be that some people can eventually eat onions again while someone else can never even look at onions again. You may be able to eat very little at first, which is what happened to me. I am very slowly now reintroducing foods. Garlic, onions and chocolate are not even in my horizon at this point. Still, I have not experienced diarrhea in two months and gained 10 of the 20 lbs I lost by following this diet under the supervision of a nutritionist.
If by “pelvic therapy” you mean the pelvic floor exercises, biofeedback etc., my primary care doctor referred me for that awhile back after months of diarrhea with then no diagnosis of its cause. The therapist was extremely knowledgeable, caring and well trained in pelvic floor dysfunction therapy. Of course The therapy didn’t do anything to stop the diarrhea and at the time I didn’t think it was helpful. But now I am glad I went through the therapy because I have much better control when I feel an attack coming on—no more “accidents” while searching for a bathroom. So maybe your therapy hasn’t been totally unproductive.
Like you, I don't mean to say pelvic therapy can't be very helpful. I started with myofascial,release, which did help reduce the constriction or adhesions from multiple surgeries . I then began pelvic floor therapy, which showed I had a tight pelvic floor. This included biofeedback to help relearn how to relax/contract the pelvic floor muscles. All 3 of the physical therapists I saw were very knowledgeable and caring. However, for some reason I was experiencing more GI issues near the end of treatment, which may be totally unrelated to the treatment received. I want to stress that physical therapy can be a very valuable treatment approach.
Hi:
Fructose diet is very difficult but you can manage the diet. No sugar at all including no gum, no honey no soda etc. Just look at the labels for any form of sugars if you cannot pronounce the ingredients on the package then don’t buy it because it most likely have some hidden sugars.
Also no fruits and fruit juices.
You can also goggle and y-tube for more information or you can go to a nutritionist and hopefully your insurance will pay for the Nutritionist. I have fructose so bad that I cannot eat onions, garlic, peas and carrots. I had to experiment with different foods. My tip off with Foods was to keep a daily log of everything you eat and see how you react. I would get the diarrhea the next day that was how I was able to tell what I can and cannot eat.
Hi:
Fructose diet is very difficult but you can manage the diet. No sugar at all including no gum, no honey no soda etc. Just look at the labels for any form of sugars if you cannot pronounce the ingredients on the package then don’t buy it because it most likely have some hidden sugars.
Also no fruits and fruit juices.
You can also goggle and y-tube for more information or you can go to a nutritionist and hopefully your insurance will pay for the Nutritionist. I have fructose so bad that I cannot eat onions, garlic, peas and carrots. I had to experiment with different foods. My tip off with Foods was to keep a daily log of everything you eat and see how you react. I would get the diarrhea the next day that was how I was able to tell what I can and cannot eat.
I have fm very bad as well. But, since I have the constipation version, I had no indication like diarrhea of what food was ok and what wasn't. I was always bloated and gassy to one degree or another until I got it figured out what I could eat and started using Phillips Milk of Magnesia on a regular basis. The latter also took care of the SIBO. Some food bothers my stomach immediately, like fruits and fruit juices, honey, soda, gum, etc. but others do not. I can't eat onions, garlic, peas and carrots either. Sometimes I can eat a few nuts, sometimes I can't - I figure it depends upon how much fructose is already in my g.i. tract, and there is no way for me to really know that. I agree - it is very difficult to manage, but it does become pretty routine when you aren't trying new things! Thanks for replying.
This is why working with a nutritionist, at least at first, is so important. I have been on a Low FODMAP diet for two months and I am not eating any of the items you mentioned. No garlic, no onions, no chocolate and very little sugar. That is what happened to me at first. I went to the websites, read the food lists, and started to eat stuff that triggered more diarrhea. The diet starts very restrictive and slowly expands to other foods. It is important to follow a certain method for the diet to work. It is not just a matter of reading a list and start eating Low FODMAP foods. I almost gave up on the diet until I went to see the nutritionist and we adopted a method. Can’t emphasize this enough. It is how foods are first eliminated and then very slowly reintroduced. One can’t just randomly eat all the foods that are listed on the FODMAP diet. The diet must be individualized to your needs and specific problem, I.e., CDiff versus SIBO versus FM. It may be that some people can eventually eat onions again while someone else can never even look at onions again. You may be able to eat very little at first, which is what happened to me. I am very slowly now reintroducing foods. Garlic, onions and chocolate are not even in my horizon at this point. Still, I have not experienced diarrhea in two months and gained 10 of the 20 lbs I lost by following this diet under the supervision of a nutritionist.
Thanks! After being on my own with fm since 2002 I may have already figured out most of what I can and cannot eat, but will probably try linking up with a nutritionist.
I have fm very bad as well. But, since I have the constipation version, I had no indication like diarrhea of what food was ok and what wasn't. I was always bloated and gassy to one degree or another until I got it figured out what I could eat and started using Phillips Milk of Magnesia on a regular basis. The latter also took care of the SIBO. Some food bothers my stomach immediately, like fruits and fruit juices, honey, soda, gum, etc. but others do not. I can't eat onions, garlic, peas and carrots either. Sometimes I can eat a few nuts, sometimes I can't - I figure it depends upon how much fructose is already in my g.i. tract, and there is no way for me to really know that. I agree - it is very difficult to manage, but it does become pretty routine when you aren't trying new things! Thanks for replying.
Forgot to mention I take 17 supplements/drugs due to various health conditions, so that is why I came up with a way to determine the sugars as inactive ingredients. They add up!
This is why working with a nutritionist, at least at first, is so important. I have been on a Low FODMAP diet for two months and I am not eating any of the items you mentioned. No garlic, no onions, no chocolate and very little sugar. That is what happened to me at first. I went to the websites, read the food lists, and started to eat stuff that triggered more diarrhea. The diet starts very restrictive and slowly expands to other foods. It is important to follow a certain method for the diet to work. It is not just a matter of reading a list and start eating Low FODMAP foods. I almost gave up on the diet until I went to see the nutritionist and we adopted a method. Can’t emphasize this enough. It is how foods are first eliminated and then very slowly reintroduced. One can’t just randomly eat all the foods that are listed on the FODMAP diet. The diet must be individualized to your needs and specific problem, I.e., CDiff versus SIBO versus FM. It may be that some people can eventually eat onions again while someone else can never even look at onions again. You may be able to eat very little at first, which is what happened to me. I am very slowly now reintroducing foods. Garlic, onions and chocolate are not even in my horizon at this point. Still, I have not experienced diarrhea in two months and gained 10 of the 20 lbs I lost by following this diet under the supervision of a nutritionist.
Totally agree with guthealth regarding the FODMAP diet. I'm still on the reintroduction phase of the diet and not quite yet at the total low-FODMAP diet stage. I have also found it is very important to follow a certain method for the diet to work....and to really strictly follow it. I have yet to cook any low-FODMAP recipes. I just make things that are in my current allowed list based on the program the nutritionist helped me define. I cannot have salsa, garlic, onion, beans, etc. yet. Not at this stage.
As you progress slowly adding foods, you may find that the quantity and frequency may also be a determining factor. For example, you might be able to tolerate 1/4 cup of beans but not 1/2 cup. Or you can have chocolate one day but cannot have it again for another 3 days. I know I can have 1 Hershey's chocolate kiss to satisfy my craving; but no more!
But I'm also one of the lucky ones that just has FM; no other major complicating factors.
One thing I have learned....and I think its because my system is so 'clean' now due to the elimination phase of the diet (which I extended well beyond the 8 weeks). In the past I could eat something and really not feel well and have issues, but now my intolerance reaction is a lot more intense. I accidentally had mayonnaise at a restaurant (big no/no; they use HFCS). I was in severe pain from the cramping. In bed for 2 days back/forth to bathroom. I'll never make that mistake again!
Thank you all for this valuable information. The Mayo gastroenterologist did do a hydrogen breath test twice and confirmed SIBO both times. There was no mention of a fructose or lactose intolerance hydrogen breath test. There was no referral to a nutritionist either, only a recommendation to try pelvic therapy, which has been nonproductive after months of therapy.
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Finally got a chance to check out all the links on low FODMAP eating (except for the Mayo eating plans - couldn't find). Unfortunately the items have much more sugar than I can digest. If a person's IBS is caused by something other than fm, or the person has fm on the mild side, these sites would probably work. Recipes had chocolate, salsa, garlic, beans, etc. which don't work for me. But, thanks for your informative e-mail! I may try linking up with a Mayo dietician.
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1 ReactionThis is why working with a nutritionist, at least at first, is so important. I have been on a Low FODMAP diet for two months and I am not eating any of the items you mentioned. No garlic, no onions, no chocolate and very little sugar. That is what happened to me at first. I went to the websites, read the food lists, and started to eat stuff that triggered more diarrhea. The diet starts very restrictive and slowly expands to other foods. It is important to follow a certain method for the diet to work. It is not just a matter of reading a list and start eating Low FODMAP foods. I almost gave up on the diet until I went to see the nutritionist and we adopted a method. Can’t emphasize this enough. It is how foods are first eliminated and then very slowly reintroduced. One can’t just randomly eat all the foods that are listed on the FODMAP diet. The diet must be individualized to your needs and specific problem, I.e., CDiff versus SIBO versus FM. It may be that some people can eventually eat onions again while someone else can never even look at onions again. You may be able to eat very little at first, which is what happened to me. I am very slowly now reintroducing foods. Garlic, onions and chocolate are not even in my horizon at this point. Still, I have not experienced diarrhea in two months and gained 10 of the 20 lbs I lost by following this diet under the supervision of a nutritionist.
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Like -
Helpful -
Hug
1 ReactionLike you, I don't mean to say pelvic therapy can't be very helpful. I started with myofascial,release, which did help reduce the constriction or adhesions from multiple surgeries . I then began pelvic floor therapy, which showed I had a tight pelvic floor. This included biofeedback to help relearn how to relax/contract the pelvic floor muscles. All 3 of the physical therapists I saw were very knowledgeable and caring. However, for some reason I was experiencing more GI issues near the end of treatment, which may be totally unrelated to the treatment received. I want to stress that physical therapy can be a very valuable treatment approach.
Hi:
Fructose diet is very difficult but you can manage the diet. No sugar at all including no gum, no honey no soda etc. Just look at the labels for any form of sugars if you cannot pronounce the ingredients on the package then don’t buy it because it most likely have some hidden sugars.
Also no fruits and fruit juices.
You can also goggle and y-tube for more information or you can go to a nutritionist and hopefully your insurance will pay for the Nutritionist. I have fructose so bad that I cannot eat onions, garlic, peas and carrots. I had to experiment with different foods. My tip off with Foods was to keep a daily log of everything you eat and see how you react. I would get the diarrhea the next day that was how I was able to tell what I can and cannot eat.
I have fm very bad as well. But, since I have the constipation version, I had no indication like diarrhea of what food was ok and what wasn't. I was always bloated and gassy to one degree or another until I got it figured out what I could eat and started using Phillips Milk of Magnesia on a regular basis. The latter also took care of the SIBO. Some food bothers my stomach immediately, like fruits and fruit juices, honey, soda, gum, etc. but others do not. I can't eat onions, garlic, peas and carrots either. Sometimes I can eat a few nuts, sometimes I can't - I figure it depends upon how much fructose is already in my g.i. tract, and there is no way for me to really know that. I agree - it is very difficult to manage, but it does become pretty routine when you aren't trying new things! Thanks for replying.
Thanks! After being on my own with fm since 2002 I may have already figured out most of what I can and cannot eat, but will probably try linking up with a nutritionist.
Forgot to mention I take 17 supplements/drugs due to various health conditions, so that is why I came up with a way to determine the sugars as inactive ingredients. They add up!
Totally agree with guthealth regarding the FODMAP diet. I'm still on the reintroduction phase of the diet and not quite yet at the total low-FODMAP diet stage. I have also found it is very important to follow a certain method for the diet to work....and to really strictly follow it. I have yet to cook any low-FODMAP recipes. I just make things that are in my current allowed list based on the program the nutritionist helped me define. I cannot have salsa, garlic, onion, beans, etc. yet. Not at this stage.
As you progress slowly adding foods, you may find that the quantity and frequency may also be a determining factor. For example, you might be able to tolerate 1/4 cup of beans but not 1/2 cup. Or you can have chocolate one day but cannot have it again for another 3 days. I know I can have 1 Hershey's chocolate kiss to satisfy my craving; but no more!
But I'm also one of the lucky ones that just has FM; no other major complicating factors.
One thing I have learned....and I think its because my system is so 'clean' now due to the elimination phase of the diet (which I extended well beyond the 8 weeks). In the past I could eat something and really not feel well and have issues, but now my intolerance reaction is a lot more intense. I accidentally had mayonnaise at a restaurant (big no/no; they use HFCS). I was in severe pain from the cramping. In bed for 2 days back/forth to bathroom. I'll never make that mistake again!
Hi:
So you go to Mayo to see a GI Doctor and he says to Pelvic Therapy. What a stupid fool
Agree