fructose intolerance/malabsorption

RECLAST ALERT! More info on the Reclast infusion I had. If you have g.i. issues, DON'T get it! I finally had everything mostly under control after 17 years, and was actually sleeping lying down flat in the bed, etc. Now all food bothers my stomach, even that which used to be ok. I'm back on Prilosec and taking the maximum ashthma meds. I know it's the Reclast and not something else because I only change one variable at a time and getting the Reclast infusion was what I changed. I've also gotten a boatload of other quality of life threatening symptoms which I've never had before including labored breathing with exercise. Some non g.i. issues I already had were made worse by the Reclast. My primary doctor says to never get the infusion again, and even to not use any form of bisphosphonates of any kind such as pills. To see the list of about 118 possible side effects of ReclastI, go to the Mayo Clinic web site, select Patient Care..., then Drugs and Supplement A-Z, and then Zoledronic Acid (intravenous route). There are about 5 pages, the first being Descriptions, then Before Using (scroll down to Other Medical Problems and you will find stomach absorption problems), with the last screen being Side Effects. I only got 1/2 dose; wonder what hell I'd be going through it I'd gotten the full dose. The 1/2 dose should last 6 months; I'm 3 months into it and finally starting to feel little bit better the last day or so. I think it is because I've upped the amount of water I am drinking, to 11-12 8 oz glasses/day. Mayo says to drink 11 1/2 cups per day. I don't think this would include beverages with caffeine. That's it for now.

Sorry to hear you are suffering so much from the use of Reclast. The medicine can be harsh on your stomach will explains the use of Prilosec. I think asthma might be a disconnected issue.

The following are my recommendations;
1) Try Lutomerase (xylose isomerase) to take care of fructose intolerance.
2) Take probiotics everyday. It helps to fill your gut with good bacteria and eliminate the bad bacteria that feed on fructose and give you IBS.
3) Take infused ginger water prior to eating. It helps IBS and digestion.
4) Take digestive enzyme containing Betaine HCl to breakdown and emulsify the food.
5) Take turmeric pills (curcumin) for digestion and inflammation.
6) Either see a Chinese or Indian Herbalist as in lot of instances like this naturopath has worked wonders and I strongly believe in it.
7) Do water aerobics and weight bearing exercises.

I hope you start feeling better.

Thanks for your suggestions. Many of the symptoms move around a lot, and right now g.i. issues are almost normal. Still get out of breath with exercise, though, especially weight bearing exercise. I had to go to the E.R. several weeks ago because hadn't been able to catch my breath for 2 days, and all of the tests were normal. So, since the problem started after getting the Reclast infusion, I think that is the cause. Two and one-half months to go!

The bottom line here if something bothers your stomach don't eat it! Trying to take supplements and medication so we can eat the foods that don't agree with us only causes further problems and side effects. There is very little I can tolerate but if I avoid those foods I feel better. In N Dakota for the summer and relatives love high carb foods, it's been very hard for me to stay on my diet because often there is nothing I can eat, ie potatoes, corn on the cob, macaroni salads ect and people get offended if I don't try their "dishes". I'm best to stick to proteins and some vegetables, they think i'm nuts but a lot of them are ill also but don't realize it's the foods.

I'd like to start a discussion on fructose malabsorption, how to control it, what to eat and not eat, etc. . Is anybody interested?

VERY LOW FRUCTOSE, LOW FODMAPS, AND GLUTEN FREE RECIPES AND DIET.
The recipes are very simple and delicious without any sugars to make it easier to stick to a restricted diet. We've developed them as we went along, and I want to share them to make it easier for others. No point in having to reinvent the wheel! Often we don't add seasonings until at the table, and then they are mostly salt and/or pepper. Note that browning food adds a lot of flavor!

I have fructose malabsorption, lactose intolerance, visceral hypersensitivity and sometimes small intestinal bacterial overgrowth. I am putting the recipes in the Fructose Malabsorption discussion section because I have found them to work for that condition, and it wasn't easy. There is so much that doesn't work, and it has been quite the journey since the viral food poisoning in 2002 I have yet to find a sugar or artificial sugar I can digest. I realize everybody is different, but we have to start somewhere. I welcome any tips anybody has; am still in the trial process and sometimes just don't feel like rocking the boat. Feel free to ask me any questions as well.

PART 1. CHICKEN BROTH. Just when you feel your worst you can only have chicken broth to eat. I have to make my own because all of the packaged versions I've seen have sugar(s) in them or seasoning I can't eat. Here's the easiest way I've found. Bring chicken thighs to a boil and simmer one hour or until done. Remove thighs. Using a measuring cup, pour the broth into wide mouthed canning jars. Place jars in refrigerator and hold until fat has solidified. Take the fat off, put the lids on (plastic are the best) and freeze. Alternately, take the fat off as you use the broth over a day or two. After thighs have cooled a bit, remove meat, divide into serving size portions, and freeze. Originally I used Cambell's no sodium chicken broth (no longer made) and was always very weak. The homemade version has much more nutrition and I never feel weak until the end of the second day or so.

PART 2. POULTRY. Bake the chicken, cornish hens or turkey. Boil white basmati rice. When the meat is done, remove from pan and set aside. Pour the drippings into a clear container such as a glass measuring cup, and let the fat rise to the top. After it has, skim it off with a gravy ladle or spoon. Then pour the drippings into the rice still in the rice pan. Serve with the meat. No seasonings are necessary while cooking; still delicious without them.

We also occasionally eat bacon-wrapped turkey tenders done on the George Foreman grill. I remove the bacon on a separate plate before eating the turkey; there is still a little sugar.

We also make canned chicken hash. We get the chicken at Trader Joe's because it has no additives (Trader Joe's Chunk White Chicken in Water). Microwave potatoes, peel, chop up and add to canned chicken. Mix in sage and/or thyme and a little extra virgin olive oil. Stir well. I sometime add a little bit of stir fried mushrooms.

PART 3. FISH. Salmon. Fry the salmon until well browned. At the same time, cook white basmati rice. When the salmon is done, remove from pan and set aside. Dump the cooked rice into the salmon pan and stir well, using the spatula to get up all the brown stuff in the pan. Serve the rice with the salmon. Again, no seasonings necessary.

Cod. Put in microwave dish. Drizzle with oil and add a little water. Cover and cook on high for about 6 minutes. As microwaves vary, check your unit's manual for cooking fish.

Orange roughy, tilapia, mahi mahi. Put in microwave dish. Drizzle with oil and add a little water. Sprinkle fish with thyme. Cover and cook on high for about 6 minutes. Again, check you microwave's directions.

Scallops. Boil basmati rice until done. Fry scallops until browned. Add rice to the scallops still in the scallops pan and stir, making sure you get up all the brown stuff. Serve.

PART 4. PORK. Fry pork chops until well browned.

PART 5. BEEF. Fry or grill hamburgers and steaks.
Meat loaf. 20 ounces ground beef, 1 c. quick oats, 2 eggs, 1/2 t pepper, 1/3 t ground sage, 2 T water. Mix all ingredients except meat and oats. Combine with meat and oats and stir well. Press lightly and evenly into greased loaf pan. Bake 350 degrees about 50 minutes.

Bacon wrapped fillets. We occasionally have these; I remove the bacon on a separate plate before eating the fillet. There is some sugar left on the fillet.

Arby's classic roast beef, plain, without the bun.

PART 6. EGGS. Fry, scramble, boil. I use canola oil. I eat eggs with fried potatoes and sometimes a piece of leftover pork chop from dinner. Occasionally I make an omelet with spinach (Trader Joe's frozen chopped spinach is great) and leftover cooked meat or fish from dinner.

PART 7. VEGETABLES. Cook all vegetables.
Spinach microwaves well. We steam the broccoli, broccolini and carrots. Broccolini or "baby broccoli" is actually a cross between broccoli and kale. Kale has fructans in it, so broccolini probably has some. However, it is so delicious and if eaten in moderation is tolerable. Incidentally, broccoli has lactose in it (and so probably broccolini) so I take a couple lactase tablets when eating it. Carrots have sugar in them, so I only eat one baby carrot every other day.

Green Swiss chard, celery in small amounts, and occasional mushrooms are also ok. Just learned mushrooms have polyols in them, but my reaction isn't that strong.

Potatoes. Boil, microwave or fry. Don't eat the skins because they have fructans in them.
Baked. Bake on the bottom shelf of the oven at 375 degrees so they are browned, giving them added flavor.
Fried. Microwave potatoes until done. Peel, chop up and brown on top of the stove. These are great with eggs, and especially good under fried eggs. I make enough for several meals and freeze in individual containers.
Mashed. Boil russets. When done, peel and mash, adding a little of the potato water (and broth if you have it). Add seasonings like sage or thyme if desired.
Arby's potato cakes.
Kettle brand potato chips, unsalted or salted. No crinkle chips - all I've seen have additives including sugars regardless of brand.
Onions. Rarely eat, and then only the clear liquid that comes out while quickly sautéing them. Remove the solids after sautéing. The solids, or the juice that isn't clear, are a definite no-no.

PART 8. GRAINS.
Oatmeal. Use quick oats. For a quick breakfast, microwave in a 2 c. measuring cup. Fill half full of oats and the remainder with water. Microwave on high about 1 1/2 minutes (or what your microwave specifies). It is good with Pompeian Extra Light Olive Oil sprinkled on top along with cinnamon.

Rice. White basmati rice works well. I believe brown rice has fructans in the husks. Tried jasmine rice but it tasted rather sweet compared to the basmati.
White rice noodles. Bought some but have yet to try them. Should be ok.

PART 9. GRILLING WITH A CHARCOAL GRILL.
This is the grill we have, and the starter fluid would get on the food and bother my stomach so we had to quit. Then discovered the "charcoal grill chimney starter," which is metal tube you fill with charcoal and then light newspapers underneath to start the charcoal. Now we can eat grilled food again!

PART 10. POT PIE TOPPER.
Bake russets at 375 degrees on the bottom shelf of the oven. When done, mash, adding egg and seasonings. Mold into desired shape

PART 11. OILS.
Canola oil
Olive oil - Pompeian Extra Light Tasting and Pompeian Extra Virgin olive oils are no sugar and very good tasting. Be careful and don't use just any olive oil, since olives are a fruit and olive oil often contains olive juice.

PART 12. SPICES AND HERBS. This is a tricky area.
Cinnamon, sage, thyme, salt and pepper are fine.
Tried rosemary, oregano, and fresh cilantro and these were not ok.
Basil and bay leaf are supposed to have no sugars, but have yet to try them.
Perhaps some no- sugar spices/herbs contain fructans?

PART 13. DESSERT.
Potato chips with cinnamon on them. My only dessert for years.

Nuts with cinnamon. Fry Planters Deluxe Mixed Nuts (remove the pistachios first) in Extra Light Tasting Olive Oil until browned. Add cinnamon after removing from pan. Let cool, and then store in refrigerator or freezer about 1 week to give the nuts a chance to absorb the cinnamon flavor. Nuts have sugars in them so eat in moderation.

Shortbread cookies. 1 c. almond flour (not meal), 1/4 t. salt, 1/4 c. Pompeian Extra Light Tasting olive oil, and 1 t. Frontier Coop Organic NonGMO vanilla extract. Eat in moderation. Almonds have fructans and perhaps fructose in them; vanilla extract has sugar in it

PART 14. BEVERAGES
I am still drinking mainly distilled water, since out city puts chloramines in the water and they bother my stomach. Can get by with a glass or 2 of city water daily but that's it. Plain black and plain green tea are supposed to be sugar free but have yet to try them.

Eating out, I ask for water from the faucet, no ice or lemon, since water through the pop machine has sugar in it.

PART 15. L-ALANINE AMINO ACID. This supplement has been shown by researchers at a university in Iowa to help the intestinal wall absorb fructose. It helps a lot. I use probably 8 t. a day when I eat potato chips, baby carrots, drugs/supplements that have sugar in them (more on this topic later), etc. If you get it at BulkSupplements.com it is very affordable. I get it as a powder and mix it in water before using. Put 2 heaping T in a 2 c. glass measuring cup, add 1/4 c. water, and microwave on high for about 1 1/2 minutes. After removing it from the microwave, stir well and then add water to the top of the measuring cup to make 2 cups.

PART 16. SUGAR CONTENT IN FOODS. The U.S. Department of Agriculture has a priceless site called USDA Food Composition Database, at
ndb.nal.usda.gov. Not only does the site give sugars in foods (fructose, sucrose, lactose, etc.), it RANKS the foods by sugar content. To look up basic foods or drinks, click on Nutrient Search, select up to 3 nutrients such as total sugars, fructose, etc., and then selected to food group you want to learn about, such as spices and herbs, cereal grans and pastas, etc. There are many other nutrients besides sugars, so the database would be useful for a lot of people. This database is the perfect example of your tax dollars at work!

This entry wouldn't be complete without thanking the doctors and staff at Mayo Clinic and our local university medical center, including a medical librarian (also an MD) who did a lot of online searching for me. My husband has also been a wonderful help, offering moral support, cooking, etc. I could not have gotten to this point without them. Also, thanks to Mayo for Mayo Clinic Connect so we can have a chance to help each other. 1/2/2019

@jackiem95, @guthealth, @baponline, @pjss48, @redhead63, @sarcomasurvivor, @gracheig. Just discovered a delicious truly no sugar bacon that went down fine! It is made by a company called Pedersen. There are 2 varieties. 1. Uncured No Sugar Buckin Bacon (pork, hickory smoked). 2) Uncured no sugar hickory smoked turkey bacon. Health food stores may carry these, but not here. Here they carry a Pedersen no sugar pork bacon that does contain the added natural sugars citrus extracts and pomegranate extract. You can order the bacon by calling the Simple Grocer 1-325-451-7545. (Simple Grocer is the distribution center for Pedersen products.) The bacon is shipped frozen in dry ice. The Buckin bacon is lower fat than the usual bacon, which is a good thing. It is probably the best bacon I've ever had.

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.

Have you checked out the Fructose Malabsorption discussion on Mayo Clinic Connect? You might find it helpful. Good luck.

Hi Lelia, I haven't been on the site for the 3 weeks I was at Mayo. So many tests and consultations. I do have a diagnosis of (CIP) which I did not realize is a rare potentially disabling gastrointestinal disorder characterized by abnormalities affecting involuntary coordinated muscular contractions (a process called peristalsis) of the gastrointestinal (GI) tract. One cause could be Mixed Connective Tissue Disorder or numerous other things. It can go into Cachexia which is a physical wasting syndrome characterized by loss of weight and muscle mass. I was hoping for better news. The doctor has me on a plan which is not working very well. I will be talking with him again on the 30th.Thanks again for all your help and support. Elaine