Mayo Clinic Connect
I'd like to start a discussion on fructose malabsorption, how to control it, what to eat and not eat, etc. . Is anybody interested?
Liked by Mamacita, Volunteer Mentor, Leonard, grachelg, graceandpeace
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.
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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
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.
Liked by elle1233
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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