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I'd like to start a discussion on fructose malabsorption, how to control it, what to eat and not eat, etc. . Is anybody interested?
Not sure what a a malabsorption test consists of, but I have SIBO and it kept recurring after a week off antibiotics because I kept eating too many carbs and sugars or foods that fed the bad bacteria in my panic to gain weight. I lost 20 lbs in two months and had either diarrhea or loose stools daily. Therefore, though I ate, the bad bacteria kept highjacking nutrients before my body could absorb them. After my third round of antibiotics I went on a low FODMAP diet under the guidance of a nutritionist, and it has made all the difference. Not only have I not relapsed in two months, but I have gained 10 lbs back. I think knowing what to eat, how, and the right proportions has made all the difference for me. Please read up on SIBO diets, such as Low FODMAPS and SCD. I knew nothing about this prior to August of 2018. Wishing you good health.
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I must add that my doctors were of no help whatsoever to me regarding diet. Both my internist and GI doctor kept telling me to eat normal and eat bland, high carb foods to gain weight. Worst advice ever for SIBO. I had to do my own research and found both SCD and Low FODMAP diets by researching the internet. I was not very successful with diet at first when I tried it on my own. Made many mistakes. Started to see improvement within two weeks of working with a nutritionist. Well worth looking into.
Hi. The test is actually a "hydrogen breath test" (google it for more info). As far as I know there are 3 individual types of hydrogen breath tests: fructose malabsorption/sugars, lactose intolerance, small intestine bacterial overgrowth (SIBO).
Each test (mine done on separate days) takes a few hours. They take a breath measurement, have you drink some stuff, and then take measurements at intervals (ie, every 20 minutes). Basically if your body cannot digest the substance, it will ferment in the colon and produce hydrogen and other gases. That is what they are measuring. Larger than normal amounts of exhaled hydrogen measured during a breath test indicate that you aren't fully digesting and absorbing the substance.
Thank you for the info on breath tests. Many GI doctors are not enlightened about these tests. My GI doctor, for example, diagnosed me with SIBO based on symptoms and called the breath tests unreliable. My nutritionist subsequently said she wished the doctor had ordered them when I was symptomatic so we could have known for sure. All this is less important to me now because I am doing better, but I would have insisted on a breath test then if I knew then what I know now.
Are you doing this in person with the Mayo nutritionist or remotely? I looked online and couldn't find the Mayo Clinic FODMAP Eating Plan. How do they determine the order of food reintroduction? What if you can't tolerate a food? Is that it for that category or do you just try each food separately regardless? For example, if you can't tolerate cabbage, do they then assume you can't tolerate cruciferous vegetables so you don't try them? How long do you wait before introducing a new food? Thanks. I'd appreciate any info you could give.
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.
There is a website she recommended: http://blog.katescarlata.com/tag/fody-foods/
It contains a Low FODMAP grocery list.
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).
I must also add that because I did not have any type of breath test at time of diagnosis, the nutritionist had to be more restrictive with the diet at first and assume I had all sorts of issues I may or may not have. For example, I have been gluten free, lactose free and not eating much sugar, other than sugar found in fruits and a drizzle of maple syrup here and there. Sounds like the breath test would have given us more important and useful information. Breath test did not matter so much to GI doctor, I suppose, because it did not alter his treatment, antibiotics and more antibiotics. I am not a medical doctor but it sounds like a breath test would be worthwhile.
Thank you for sharing all this information
What's left to eat?
During FODMAP elimination phase, I could eat variety. Fruits like bananas, blueberries, cantaloupe, lemon, raspberry, strawberry, tangerines; veggies like green beans, carrots, eggplant, kale, lettuce, potatoes, spinach, tomatoes, zucchini; meats like chicken, turkey, beef, fish,pork, shellfish. I could have eggs, peanut butter, butter, margarine, olive oil, beer, wine, coffee, tea. Seasonings like salt, pepper, parsley, oregano, dill, rosemary, etc.
I know I can handle lactose so I had milk, cheese, etc. Was totally gluten free.
The biggest issue is sweeteners in prepared foods and sauces, salad dressing, etc. Absolutely NO garlic or onion. So I use olive oil and lemon on alot of things to provide flavor. Yes, it is fairly bland and limited in scope.
Hard to eat out or at someone else's home. My friends understand and are very patient with me when I order at restaurants!
I have to be very specific with the waiter about how to prepare the food and what not to include, etc.
Obviously everyone is different and may have other health conditions/GI issues that make this more difficult.
A good resource for Low FODMAP foods is http://www.katescarlata.com/
Also https://www.monashfodmap.com/. Monash Univ in Australia created low FODMAP diet for IBS
Hope this helps!
Have you though of eating foods that bother you and then having the breath test? Then you'd know whether or not you have fm. Just a thought. It's not too later.
Thanks so much for all this info! The nutritionists didn't have this info the times I was at Mayo, but I'lll check into it now. I've probably already done most of it on my own -trial and error. Tried and can't eat legumes including peanuts; same for corn, tomatoes, summer squash (shaped like a cucumber), cucumbers, asparagus, red/rainbow chard, green and other color peppers, fruit of any kind (used to be my favorite), etc. Even spices/herbs a problem. The fructose/glucose balance doesn't work for me, so can't eat sucrose. Tried glucose tablets once for energy, and boy was that a mistake! Go figure.
Should also mention the breath test involves drinking a large glass of fructose before they do the breath test. So, you wouldn't have to have gone off your diet…. I'd like to think fm is curable, but have my doubts since it is caused by injury to the lining of the intestine. Mine has not improved; still need to watch what I eat. Good luck.
I am enjoying eating what I can without experiencing diarrhea. Will continue to work with the nutritionist and consider a breath test if she or the physician suggest it. Not sure whether I will ever be able to eat like I used to. But I am so thankful that I can eat food without the food hurting my gut. I was in very bad shape just two months ago.
I so glad things are going well for you! Sometimes it is hard to want to rock the boat. I'm at that point too. Should be trying to broaden my diet, but sometimes the side effects aren't worth it.
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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