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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?
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.
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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
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!
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.
Fructose is in all fruit, the majority of vegetables, lots of spices and herbs, wheat, barley, etc. Wheat contains the chains of fructose called fructans and these are also a problem. As you say, the best way to control the symptoms is to avoid the foods that cause them.
This is really addressed to both Saucy and Lelia. Just wanted to put my 2 cents worth in the discussion. I have the same problem and the same frustrations! Not much help on diet advice from docs or dieticians or nutritionists. The things with seeds like tomatoes and cucumber can be eaten if they are peeled and seeded. I am also going by Gundry's Plant Paradox diet, and felt better within 48 hours after making the change! I know it is still controversial, but it has sure helped me. My use of meds for gut problems, both prescription and over the counter, has dropped by about 75%.
I don't agree with everything Gundry recommends, but I my diet is about 90% what he recommends. I still cannot do garlic or onions, or raw dark leafy greens, but everything else is going quite well.
Yes, his book helped me a lot and I can't eat any wheat products oatmeal, potatoes ect. The book Fast Tract Digestion, Heartburn also wqs a big help explaining how these foods react and cause problems, there also is one for IBS. I also found a glass wine after dinner also helps my digestion!!
Thank you saucy – yes, I'm aware that fructose is more than HFCS, I think I said threw that out meaning that and all fructose – anyway, the point that I was getting at was that you can perhaps 'self diagnose' this problem by doing an elimination and seeing how your body reacts, without necessarily having any 'formal' testing? Do I have that right? Or did you also have some kind of test… or is there some kind of test? I apologize if I'm repeating info already put out, but I am new here, and haven't had time to go back and read all the threads (although I am working on it).
It is amazing that you felt better so quickly! Can't remember if I wrote it on this thread, but I was also very disappointed with the Mayo dietician I saw just this past Tuesday, so they haven't updated at all still! I thought as part of this "#1 GI center, I was going to be seeing one who specialized in GI issues. The one I saw wasn't even familiar with the FODMAP diet (and one of my diagnoses is SIBO). She told me to eat 3x a day, gain wait and eat lots of fruits and vegetables, etc. Typical stuff you'd read anywhere. I am planning on letting them know they really should get some dedicated GI dieticians if they want to advertise a "comprehensive, treating the whole patient program" ( in a nice way.
It seems one really has to basically manage their problem/s themselves. I think I had high hopes it would be different at a major center, but seems not. I'll look back on your posts for the books, etc. and appreciate your information. I know everyone is different, but I've learned a lot more from patients on this journey. I'm curious about some of these intolerances b/c there seems to be a relationship between them and people with SIBO.
I really want to take as few meds as possible, as in my experience and from reading other people's stories, they can sometimes cause more problems.
This will certainly be a challenge for me, as all love all my sweets. Although I've been sick for 11 years.
One more question. My problems started after a gall bladder surgery, prior to that, I had no problems, so no intolerance, at least that I was aware of. Is it possible for this to develop later in life? I have a feeling my doctor will poo-poo this problem and say that 'it is something genetic you would have had problems with your whole life". He's young and very much "by the book". 🙂
"Not much help on diet advice from docs or dieticians or nutritionists."
Well, I can attest to that. 11 years and no medical provider has ever brought it up, which actually amazes me. This is the GI system! How can diet not be important? I think we're on our own!
Seems to me your approach is probably best for most of us. You have to research, and then take what works for you. It might not be everything that one source suggests, but maybe they offer something. Write now I'm completely lost, and almost afraid to eat because I don't know if it is going to make me better, worse, or not matter, I had such high hopes about Mayo, maybe I heard them wrong, but my impression was that I was going to see a special GI dietician who would guide me through this maze.
I really appreciate that there are people like you and the others here who are willing to share their experiences, at least it is somewhere to start!
Yikes! That's pretty much everything I eat! I do like the wine part!
Back to the fructose.. I guess it would be an experiment, but I was wondering if one would get some relief by decreasing .. vs. total elimination. So, sucrose is fructose + glucose, what if one drastically cut out as much fructose as possible, but snuck in a little sucrose (being realistic).. I guess one can only try.
It does seem like doing the total elimination would be the best way to start, see if it helps, go from there.
I was tested and it was negative. Also went to Mayo nutritionist, they are old school and didn't have a clue about diet for SIBO or Fm. Just gave me handout for FODMAP. Also asked about items on the list that raise my blood sugar (when I get off my diet my A1c goes up). She gave me the Mayo diet which was all carbs!! You have to do all the research yourself like I said before doctors only know how to administer drugs. Your SIBO is probably caused by the intolerances in your diet. Once you get the bad bacteria in you system it wrecks havac. I've been studying nutrition for the last several years in hopes to get my license and help people get through this. I mentioned the books that have helped me and the KETO diet pretty much eliminates all the foods I can't eat. They love to tell us to eat fruits its good for us but it really isn't, it's sugar no matter how you cut it. You can take some supplements and one that has really helped me is Collagen. I put 2 scopes in my coffee in the morning. Also great for your skin and hair!! This is a great sight to share ideas. Possibly after your gall bladder surgery you were given antibiotics in your IV, that can cause all kinds of digestive issues. Just keep searching, you will find all the answers!
If I cheat and have any sugar I pay for it so you'll have to decide if it's worth it! If i cheat for too many days in a row then it takes weeks to feel better, bad bacteria builds quickly and takes forever to get rid of. You will eventually get used to living without it!
Is it any sugar or only fructose ?
I have found that I can eat potatoes without the skin, and potato chips. The skins of potatoes have fructans in them (chains of fructose). Also, for some reason quick oatmeal is much better tolerated than regular, so that might be worth a try. If you can drink wine, you can probably eat potatoes without the skin and quick oats.
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