View Full Version : FODMAP? LEAP test?

04-24-2013, 08:27 AM
Sorry if this has been posted/discussed before, I'm pretty new to the boards. I have recently started on the FODMAP diet, and am currently in the elimination phase. I'm wondering if any of you out there have tried it, and how it has worked for you. I've been on it for 5 days now, and I've only seen a slight decrease in my symptoms. Still having some gas, bloating, and nausea.
I cut gluten and dairy about a month ago, and that worked for about three weeks (diarrhea stopped), but then after 3 weeks, the bloating and stomachaches and occasional nausea came back. I'm trying the FODMAP elimination diet in hopes that I'll be able to identify trigger foods/ food groups.
The elimination phase is hard! I find myself craving so many things, It's a bit depressing at times. And it's a difficult diet to understand, so I have to keep reading and reading to understand it better.
Have any of you tried it? Has it worked for you? How long into the elimination phase did you feel better? I have been careful with the 'borderline' items, and only consume the recommended amount, and hope that I don't have to cut those items out completely.
I'm working with a dietician, and she would like to have a LEAP test done as well. Have any of you had this done? I would like to have it done, as I suspect there may be individual items causing my troubles, rather than groups of items. Or both. I don't know!
Thanks in advance!

05-13-2013, 09:59 AM
I've been trying FODMAPS for two weeks, one day. After about a week or so, I'd say I felt better. Not well, but manageable as they say. But now, I feel bad again, just in a different way. Still loose stools, runny, but mostly just in the morning. I used the book by Patsy Catsos which helped a lot since it had menus for a week so I didn't have to understand the diet so much as just religiously follow the menu. It's been very hard for me and is now so depressing to think "Okay, I don't get to eat a single thing I want but I still don't feel well?" Plus, my husband and daughter still eat regular food. I've had IBS for about ten years, if not my whole life but let's say "officially" but every year it gets a little worse. I feel like doctor's just say Oh, it's IBS and that's that. I've been offered no help beyond OTC drugs and anxiety pills. I'm on the verge of just returning to a regular diet. What's the point? I can't afford a dietician or even regular doctors anymore as my 10 year odyssey has cost a fortune, even with insurance, and they don't do anything for me anyway. I must have seen 8 doctors, 2 gastroenterologist, 2 rheumotologists. ob/gyn, naturepath.

Sorry, this is turning into my sob story. yes, i tried FODMAPS, worked at first, then the pain just shifted. I've not had a LEAP test. It's been very hard for me but I have managed to stay on diet without the allowed extras like coffee but I'm this close to dropping off.

Hope you do better than me, I surely do.

05-13-2013, 10:47 AM
So sorry to hear that you're not having any luck. I've been on it for over 3 weeks now, and don't think I'm any better. I am seeing a nutritionist/dietician, even though I can't really afford it! I just had a ton of bloodwork done, and everything is pretty much normal. (I'm glad to hear it, but frustrated that we still haven't found the cause). The dietician told me that if the FODMAP diet isn't working by 3 weeks, then to stop. I will keep gluten and dairy out of my diet for now, since that has helped some of my symptoms, just not all (which prompted me to try FODMAP).
I am mentally at the point you are. I'm ready to just say 'screw it!!' Why deprive myself of the things I love (soy, fruit, nuts, etc) if I'm miserable with or without them?!
I'm thinking of having a test for SIBO done. I think that's the next step, since it could be causing my symptoms. Then treat that if needed, and check out food intolerances via the LEAP test after that. Everything is just so expensive, especially since it's not covered by insurance.
Keep me updated on how you're doing. It's nice to talk to others who are going through the same thing at the same time...

05-13-2013, 02:25 PM
Maybe I can piggy back on your dietician although my FODMAP is different from yours. It lets me have fruit, just in limited amounts. No more than 1/2 serving per meal. Same with nuts. It even says beer and coffee are okay but I know that doesn't work for me. The book I'm using, cuz it had the menus in it or i could never have followed it, is written by a dietician but I have read that there's lots of difference tween interpretations of FODMAPS and diets too. I think I'm going to stay on FODMAP partially and slowly start adding things to say if it makes it worse. I have improved, but not normal, yet and is that irrational to want normal? My husband says I'm about 50% better and I have to admit, I'm eating healthier now than ever. I guess the real trick is to food diary and just figure out what works for you and what doesn't.

Your medical system sounds better than mine. I've been to like 8 different doctors over the years and gotten responses like "see a psychiatrist" "It's just menopause" and my all time favorite, "Maybe you're just sick". I go to my GP to try to talk her into ordering some tests for me that all come back normal but maybe I can get a referral out of her to a specialist to try to talk him into ordering some tests that all come back normal. They just tell me IBS and tell me to take OTC. Do you have a gastroenterologist or are you working with your GP? Remind me what LEAP is? I've been struggling with this for 10 years off and on so it's hard for me to think it's something like SIBO since i can go a year or two without a problem, then spend months just miserable with no help. But I'd be interested in hearing your story. Keep my updated!

05-14-2013, 07:15 AM
Tinker, I have been using the FODMAP book by Patsy Catsos. I love fruit soooo much though, so it has been hard to severely limit how much fruit I can have. Cutting out soy has been tough too, since I don't eat dairy (I used soy milk, soy cream cheese, soy cheese, etc). I like coconut milk, but it's not the same. Nuts are limited too, and i used to enjoy having a lot of those for the protein and healthy fat. Probably the hardest has been to cut out garlic and onion (that stuff is in everything!!).
I agree, I have been eating healthier, fresher foods. But I'm still having stomach aches, bloating, and gas as my main complaints.
To give you my story in as short a time as possible: I first noticed a sensitivity to lactose when I Was 17 (I'm 33 now). So I started a combination of avoiding lactose, using lactose free products, or taking lactaid pills when ingesting lactose containing foods. It wasn't a perfect science, as some days I would get symptomatic (diarrhea), and some days I wouldn't. There didn't seem to be a predictable pattern.
In 2005, I started having problems with nausea and heartburn. I think at the time, it was stress related to my job. I had an upper endoscopy, and the doctor saw evidence of mild reflux, and said that I probably had IBS. I didn't go back to this GI doctor again until recently.
Fast forward to a year ago. In April 2012, I was hospitalized for 3 days after a particularly nasty bout with a viral stomach bug. I was nauseated and had trouble eating for MONTHS afterwards. My IBS also seemed to change at that point. I had a lot more issues with bloating, gas, diarrhea, nausea, and now sometimes constipation. But I continued to just deal with it.
Last December I decided to visit my GI doc again, as I was still not feeling quite normal. I had a colonoscopy and upper endoscopy done, and everything came back normal. No colitis, no celiac.... My GI told me that he doesn't belive in elimination diets AT ALL. He furthermore said that more women have IBS than men, and that at my age, it should be getting better now, since 'I have my kids to worry about now, which should take my mind off of my gut'. What a bunch of BS. He said, more fiber and less stress were the only things he recommended. (And he is in a big group of doctors, he specifically being the expert on IBS in the group). I was not impressed.
Then a few months ago I bought some lactaid ice cream, which had never been a problem before, and had a few servings over the weekend. I had never been more miserable. Nausea, stomach pain, diarrhea, the cramps were awful! I had been doing some research about cutting out gluten, since my mom has cut gluten and feels better (she has polymyalgia rheumatica, lots of chronic pain). I decided right then and there to cut gluten and dairy completely, and see if my symptoms improved.
The first week was tough, with withdrawl symptoms. Then week 2 and 3 were amazing. Having bowel movements at the same time every day, no more diarrhea, no more constipation, gas or bloating... Then the 4th week, I started having gas, bloating, and stomach aches again. I went back to the GI doctor, who pretty much told me to come back in 6 months after I was all done with this 'elimination diet nonsense'.
Then I heard about the FODMAP diet and decided to give it a try. I made an appointment with a dietician to help me. But I think she's new at this, she told me to add nuts and avocado to my diet to keep from losing more weight. (a problem since cutting out dairy and gluten) (But avocado and nuts are limited). And she also told me to buy a whey protein that contains lactose, a omega 3 supplement that contains glycerin, and a probiotic that contains inulin. All no-nos on the FODMAP diet. Oh, and sent me recipes for shakes that I could make with the protein powder, and all the recipes had lots of fruit. So I avoided those things and told her why. She asked me to get a lot of blood work done, blood chemistries, thyroid function, lipid panels, vitamin d, folic acid..... the list goes on and on. But since she's not a doctor, I had to go to my general practitioner to get the tests ordered. Luckily my GP is very nice, and although she didn't understand why, she ordered the tests. They all came back normal. Which is good news, but I still don't have an answer. And I'm not looking forward to the bill for those labs, I'm sure a few weren't covered by insurance.
The FODMAP diet makes sense. But when I googled "what if FODMAP doesn't work?", I found a site that considered SIBO. And it makes sense. Maybe my gut was cleaned of all bacteria last year when I was really sick, and stuff got out of balance? I think SIBO can wax and wane, so it can cause different symptoms on different days. It depends on what you eat too, depending if it's food that the bacteria thrive on or not. And SIBO can cause a leaky gut, letting food get into your bloodstream. Which can then cause a reaction, or a food sensitivity. So if I get tested for food sensitivities now, it may show more things if I really have SIBO.
So I think we're going to do a SIBO breath test next (more money... ugh..). And treat it if needed. Then, we'll do a food sensitivity test. The LEAP test is the food sensitivity test. I don't know a whole lot about it, and there's a lot of controversy about if it's accurate or not. But at this point, I feel like I'm grasping at straws. I wish I had the money to just get every test done under the sun! Or to go to the IBS treatment center in Seattle (yet another book I've read in my quest to figure this out).
So there's my sob story.... :o/

05-14-2013, 08:08 AM
Well, I guess I should consider SIBO. I've just reached a point where I dread going to doctors to have them tell me there's nothing wrong. One even gave me a print out about it's all in your head. Times like these I wish I was French so I could just go to the doctor whenever I wanted at no charge. I didn't know SIBO waxed and waned. I have really had stomach problems all my life. When I was at the age of changing from baby food to real food, I fractured my skull. My parents had 8 kids under the age of 11 and one of them with a fractured skull. They did the best they could but they pampered me too much and when I fussed over eating new foods, they let me stay on baby food. Too long. I ate nothing but baby food and bread and butter till I was like 3. I can remember this period - my nose used to bleed a lot, I used to bruise very easily. Finally my family figured it out and the battle over getting me to eat began. It's amazing I'm not anorexic but I've always had stomach aches at anything with "flavor" as my sister puts it, then after I had my daughter it got much worse. I always wonder tho about that first 3 years of my life. They say so much important development of everything happens then.

I have heard IBS gets worse and worse as you get older and I think for me it's very tied into hormones. When my periods were winding down, I used to only have them in February and August. And that's when my stomach is always at its worse also. My husband keeps saying "it's just that you're getting older. Everything gets worse when you're older". I'm 53 which doesn't seem like i should be getting ready for a rest home.

So which part of the doctor world do you go to get a SIBO test and LEAP? I dread it, but I suppose I really should try to continue on with this, instead of just living with the pain. I've just been a housewife for the past 15 years but next year, when my daughter goes to high school, my husband expects me to go to work. I wonder how the hell I'm going to do that in this state.

05-14-2013, 10:44 AM
I believe that a GI doctor can order a SIBO breath test. However, my nutritionist can have one ordered for me to do at home. It costs about 120 I think. I'd rather do it that way, so I can do it in the comfort of my own home, and I'm not sure that my GI doctor will order it for me, since he hasn't been really helpful at all. Read up on it before you order one, there are a couple of different ways that it can be done, but basically, you fast for a certain number of hours, drink a liquid (different tests contain a different type of liquid, and some are better than others), then breathe into an apparatus that stores your exhaled breath, every 15 minutes for a certain amount of time.
I found my nutritionist via the search on the fodmap website. (Patsy Catsos' website). Perhaps if you can find one in your area, he or she can help you to get these tests ordered. I looked at all of the options for fodmap nutritionists in my area, and chose mine based on all of the other things she treated (leaky gut, sibo, etc) as well as the tests that she can order. (The traditional bloodwork had to be ordered through my doctor, but my nutritionist can order the adrenal stress test, food intolerance tests, vitamin d test, stool testing, etc). You pay more if you go through the nutritionist instead of through a doctor, but you can pay for some of it with a healthcare spending account, if you have one, or you can always try to request reimbursement through your insurance company.

05-14-2013, 02:38 PM
Very valuable info, thank you.

05-17-2013, 07:21 AM
I want to update that after 3 weeks on FODMAPS, I'd say I'm back to about 95% normal. Still have some BM probs in the morning, but other than that, pretty well. But I still am on the elimination diet with only the barest of nudges off. I've gotten to be afraid to try the challenges cuz what if it takes off on another 3 month bad flare? But grateful to be almost back in my own skin now. Maybe Patsy's book is just a little ambitious with a 2 week's and you'll feel much better.

05-17-2013, 08:52 AM
I was briefly reading about fodmaps on line and to be honest I don't think it will work for me. I have major issues when I eat lettuce (especially everyday) and nuts... and these foods are allowed with fodmaps diet....

anyone in the diet tolerating salads and nuts?

05-18-2013, 08:11 AM
I tolerate salads but not nuts. this diet also lets you have coffee (!) and decaf but just one cup a day. But I can't do that either. It's a good start but back to the old 'find out what works for you' plan.

05-19-2013, 12:01 PM
Tinker, that's good that you're feeling better! If you're nervous about the challenges, just be sure you do a light test first, with only one serving from that group. Then the next day, fill your day with that fodmap group. Save it for a time when you can stay home! :-)
After three weeks, I had no improvement at all. So for me it wasn't worth continuing. I actually felt a bit worse some days. And Leah, I actually think it was due to the increased amount of salads and nuts I was eating.
Interestingly enough, I received results back from a salivary adrenal panel. They also tested for anti-gliadin iga, and it was positive, even after being off of gluten for a couple of weeks before the test! So I got that suspicion confirmed, and I'll be staying off of gluten! I'm definitely better since stopping gluten and dairy, but there seems to be a couple more things in my diet that irritate my gut. I'll just keep plugging along with the food diary, and hopefully have more testing done as I can. Keep me updated on how you're doing, and how your challenges go!

06-12-2013, 07:52 AM
Tinker, how are you doing? Is the fodmap diet still helping?
I stopped the fodmap diet back when I figured that it wasn't helping. No real change in symptoms, which further backs up the fact that it wasn't working for me.
I'm starting to see some results from my vigilant record keeping though. I've been keeping a food diary for a couple of months, and I've started to see some trigger foods. Red onion, oatmeal, eggs (I've eliminated fried eggs, but not eggs that may have been cooked into other things, that may come later).
I just had some stool testing done, and hope to get the results of that in a couple of weeks. My nutritionist is still suspecting SIBO and/or yeast overgrowth. Hopefully this will provide some answers. These tests are expensive! I've read a few things on yeast overgrowth, and it's quite scary! I don't want to have to cut all sugar, but I'm getting to the point of wanting to try anything...

06-12-2013, 08:51 AM
How nice of you to check back! Well, I guess I'd say I'm at the same place when I said it was helping after 3 weeks. Much improved, but not well. It makes me crazy cuz 1 - it's different than all my other flare ups this time. Hits in different places, different ways. And 2 - I'm not kicking it. Usually I'm out of it by this time but just not. Yesterday was rough for me after a couple of really good days. I'm still being super careful with food. I've reached the point where I'm just afraid to eat. It's like medicine taking now. It's like overnight, my body just flipped a switch and everything, not just my guts, is a little off.

When you keep your food diary, how do you know if it was the oatmeal you had for breakfast or the bread for lunch? Are your reactions immediate? I wish I could keep delving into this to try to get an answer but my husband and my doctors just keep telling me there isn't one and we certainly cannot afford any doctor bills right now. My husband lost his job last year when his mill closed down and the new job he was able to get pays half what his old one does. So I have to try to find work again and it's not easy both in this environment and in my physical situation either. Oh, oh, i better head out for a walk now or I'll start getting depressed.

Good to hear from you again. Glad your food diaries are helping out some. On the one had, I hope it's not yeast overgrowth for you so you could keep your sugar (I feel like I've given up everything already. Can't imagine having to give up more) but at least if it was, you'd have an answer and a way out. Good luck to you!