I'd like to start a discussion on fructose malabsorption, how to control it, what to eat and not eat, etc. . Is anybody interested?
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i have it for sure, no doubts!! My point is tests are not always accurate!
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I think that is so true. A lot of tests with "numerical values", like lab tests, are based on statistical averages for what is "normal", but there are always people who fall outside of the 'norm". "Old school" docs say you always have to listen to the patient, not just rely on the test results. I think now often docs rely too much on the tests and numbers.. for example, maybe your colon or stomach emptying isn't "slow" per the official numbers, but maybe it's slow (or fast) enough to be causing trouble for you as an individual if you have symptoms related to that. So you treat the symptoms.
How is this problem diagnosed and what kind of symptoms do people have?
It's a breath test but I had it done before I had the Linx surgery and it was negative. The best way is the elimination diet. I was still on PPI's after surgery and once I cut out fructose with in a day I was off meds. Now if I have any I react to it. It's in everything, on whole foods diet, cook everything myself so I know what's in it.
TY! So, it was that dramatic, cutting out fructose and you felt better? What kind of symptoms were you having?
Yes high fructose corn syrup is in so many things! I've been trying to cut it out for general health reasons, and it's amazing what it's in. I've never tried no fructose for any length of time. Basically you are cutting out fruit and things with high fructose corn syrup?
I have some documented problems but still at a loss for what is driving my problems, and as far as diet, I have no idea what to do – it seems eating in general bothers me, but if I could at least know more specifically what does and doesn't bother me, that would help.
I have dealt with lymphatic colitis for 40 years. I am 76 now and have just been treated for H-pylori 4 months ago. My breath test has shown Fructose Malabsorption rather then SIBO. Not sure I am glad for this diagnosis. The SIBO I could treat with antibiotics and not as strict a diet. I see my doctor this week and then a dietitian to learn how to eat very different from what I have been eating with the colitis. One diet seems to hinder the other. I feel to old to change my ways but something else to learn now. I was never a real sweet eater until I found out I can't have it. LOL There are so many things I have to throw out and I plan to have one cupboard just for me. My DH can eat anything and I make sweets for him all the time, what an adjustment. Sorry if I sound a little down or pessimistic about this, I know over time I will adjust. I have been reading some of your posts and am encouraged by them. I will return with my journey after Wednesday.
Where did you go to get the Fructose Malabsorption diagnosed and to see a dietician who understood and could help you know what to eat. I had SIBO diagnosed at Mayo, but the Doc I see, who is a fellow, doesn't appear to understand it, nor be interested in treating it, and I thought I was seeing a "special GI dietcician" who could help me, but she hadn't even heard of these problems. Very disappointing. So, I'm looking for a center that deals with SIBO. Johns Hopkins has what looks like a good SIBO specialty program, was wondering if there might be something closer to the midwest. 🙂
I agree, I can't eat any fruit including cucumbers, peppers, tomatoes, ect which are also fruits!! There are many foods on the FODMAP diet I can't tolerate
So, if you eliminate all of these things and feel better, do you assume you have fructose malabsorption (or I would assume at least intolerance? How long do you do the elimination to be sure it is the problem? If I could find a good GI dietitian/nutritionist, I'd ask! I often find patients are excellent sources of information!
High fructose, refined sugars, complex carbs all are hard for an inflamed intestine to digest and absorb and provide fuel for bad bacteria to feed on.
So, this is interesting to hear. Amazing my GI specialist nor the dietician I was referred to mentioned anything about this, in fact (I knew from reading) that diet seems important for SIBO – I usually hear FODMap , and I asked my Mayo Dr. and he said, no; it doesn't matter. I'm in the middle of my antibiotics for the SIBO, so I want to be doing everything I can to prevent it from relapsing!
I am also on the Low FODMAP diet. I was relapsing until I started working with a nutritionist about two months ago. Before then, I had suffered from chronic, nonstop diarrhea for three months and lost 20 pounds. I am now on my 21 day without diarrhea. I am in the early stages of recovery and slowly trying and introducing new foods. I am cautiously optimistic, and truly believe the diet is what has kept me from relapsing this time. I started the diet on my own and made many mistakes until I met with the nutritionist. My troubles started after taking Clindymycin. It was first thought I had CDiff but the GI doctor eventually diagnosed me with SIBO. Never thought an antibiotic could totally unbalance someone’s gut to this extent. I do believe diet is key to recovery in these cases and I am glad to read someone else is benefitting from it. Gives us all hope.
How did you find nutritionist to work with?
The symptoms you can get from fructose malabsorption can be really horrible. I developed it after a case of viral food poisoning as severe as that caused by e coli, and it was almost fatal. You can't digest the fructose because the lining of the intestine is damaged. I had incredible gas and belching, bloating, and asthma from the gas, and didn't care whether I lived or died. What's to live for if you can't eat, breathe or sleep? I also got esophageal dysmotility and food caught in the esophagus (even scrambled eggs) and had GERD from it, and small intestinal bacterial overgrowth from it. One time had to blend all my food for weeks. Also have visceral hypersensitivity. Anyway, it took about 10 years to get it diagnosed; be sure to go to a reputable gastroenterologist, at a university medical center if possible. Mayo diagnosed mine. I have a friend who has it and she can eat a lot more sugar than I can. She figures if I can eat it so can she. I've found I can hardly eat any, including artificial sugars. I want to share what I've learned. By the way, I've been to 4 dietitians and none of their recommendations worked for me because my system is so intolerant of sugar. This is a minimalist diet but it's a good start if you're still struggling to discovered what you can eat. Here's what I eat: Protein: eggs, meat, fish (all unprocessed- no ham, sausages, etc). Carbs: potatoes without the skin, white Basmati rice, Kettle Brand Kettle Chips (for energy). Vegetables: cooked spinach, cooked broccoli (in moderation), broccolini (in moderation), one baby carrot every other day (has sugar in it). Since I also have lactose intolerance and broccoli and broccolini (?) have a bit of lactose in them, I take 2 lactase pills with those. Occasionally have mushrooms, a bit of celery, green Swiss chard. Whatever you do, don't ever eat garlic, and if you try onion, only eat a little of the clear juice, not the solids. Fruit: none. Drinks: distilled water. Spices and herbs: cinnamon, thyme, sage, salt, black pepper. Nuts: occasional small amounts of Planters Deluxe mixed nuts (remove the pistachios). Oils: canola oil, extra virgin olive oil, extra light olive oil. Be careful with olive oil – olives are a fruit, and other olive oils have olive fruit juice in them. Regarding no potato skins or brown rice, I believe they contain fructans, chains of fructose, also indigestible if you have fructose malabsorption. Anyway, if anyone knows of any spices/herbs that are ok, I'd appreciate knowing. I've tried oregano and rosemary and they didn't agree. Another thing I use is L-Alanine powder, an amino acid, which was found by a researcher at the U. of Iowa or Iowa State to help the intestine absorb fructose. I take probably 6 tsp. of this a day with the potato chips, etc. All for now. There is a web site that gives all the names for sugars, to help you identify them, and another that gives the sugar content of fruits, vegetables, etc. Next time. I'm not going to talk about FODMAPS etc. but just give practical advice that has worked for me.
You said your fructose malabsorption was diagnosed at Mayo> Do you know the Dr. you saw? I just went there and it was not mentioned to me. I have a lot of trouble eating and am 15 lbs underweight.
The doctor I initially saw is no longer at Mayo in Rochester. The one I've seen since then is Dr. Grover, and he is very good.
Regarding dieticians, I've seen many including at Mayo and none were any help because they said I should be able to eat things I couldn't. One locally didn't charge me because she said I know more than she does about fructose malabsorption. FM is a new area. There are lots of tips is this fm discussion list, like diet and recipes on I believe page 5, and identifying sugars in drugs and supplements. Some people with fm can tolerate a lot more sugar than others; I fall in the category of not being able to digest any including artificial sweeteners. I put up the diet and recipes, so that would be a good place to start until you know your degree of limitations Regarding FODMAP diet, that is a big no-no for me; can't even eat at the level they start you at let alone "reintroduce" any other foods on their list.. Regarding SIBO, once you quit eating so many foods with sugars you can't digest, the SIBO bacteria won't have anything to eat fermenting in your intestines. Also, once you no longer have the constipation and bloating the SIBO should improve. If you read through this entire fm discussion from page one you will find a lot of your questions are answered. Good Luck. Lelia
Fructose malabsorption is more than high fructose corn syrup. It's all sugar, fruit and many vegetables that are really fruit such as cucumbers, peppers and tomatoes basically anything with seeds. I felt better in about 1 day. If you feel better then you eliminate it permently. I have not found a good dietician, was very disappointed in Mayo's dietician, they were not updated on anything and mostly recommend FODMAP diet which allows many foods I can't eat. I've read many good books that have helped me they are listed on my posts but basically I'm on Keto since it's very low carb and whole foods. Just keep in mind doctors treat with meds not diet when diet will change everything and keep you off the meds. I've been able to get off everything I had been on for nearly 20 years.
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