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?
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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.
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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.
Liked by Mamacita, Volunteer Mentor
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.
If by “pelvic therapy” you mean the pelvic floor exercises, biofeedback etc., my primary care doctor referred me for that awhile back after months of diarrhea with then no diagnosis of its cause. The therapist was extremely knowledgeable, caring and well trained in pelvic floor dysfunction therapy. Of course The therapy didn’t do anything to stop the diarrhea and at the time I didn’t think it was helpful. But now I am glad I went through the therapy because I have much better control when I feel an attack coming on—no more “accidents” while searching for a bathroom. So maybe your therapy hasn’t been totally unproductive.
VERY LOW FRUCTOSE, LOW FODMAPS, AND GLUTEN FREE RECIPES AND DIET – SUPPLEMENTS AND DRUGS
Since the diet is so narrow, I also take calcium carbonate powder (NOW brand) or tablet (365 brand). Note that calcium carbonate is just as absorbable as calcium citrate (which has sugars – citrus- in it) if you take it with food according to one doctor, and my labs are normal for calcium. Also take Vit D3 2200 I.U. capsule (Solar), multivitamin/mineral (365 Age 50+ Multi Iron Free), and vitamin B complex (Naturemade Super B Complex.) I realize what I take may not work for everyone since we are all different, but this gives a start. Other supplements: L-glutamine (bulksupplements.com or Nutrabio.com), lactase (Lactaid Fast Act), probiotic (Flora Advanced adults Probiotic Seven Senior Specific Strains), and Phillips Milk of Magnesia. L-glutamine is supposed to heal the intestine; I use it as a maintenance dose. The same for the probiotic. Regarding the Phillips, I have the constipation version of fm, and use 4 T every 2d or 3rd day. I believe the food poisoning left me with a sluggish digestive system because I also need the prescription drug Creon for the pancreas even though it checks out normal. Tried stopping it and there was a noticeable difference. Also take a compounded drug, ketotifen, which I also tried stopping and realized I still need. Ketotifen is supposed to quiet the mast cells in the gut and it helps. My medical librarian found this for me (among many other things). Also take sucralfate, compounded. Finally, take OTC Prilosec which I'm trying to get off of. Am down to 1/4 tablet/ day. All for now.
NAMES OF SUGARS AND IDENTIFYING SUGARS IN DRUGS AND SUPPLEMENTS.
This is the last installment of the information I wanted to share with you. Boston University has a web site which lists 20 – 30 names for sugar. Google "Boston University Sugars Table" and click on "Table Sugar." This list is intended for those with hereditary fructose intolerance, which is a totally different malady from fm, so ignore whether the table says you can eat the sugar or not. Just use it to identify names of sugars. Incidentally, glycerin is the same as glycerol, a sugar alcohol. Next, you can go to another invaluable federal database called Daily Med. Daily Med lists all of the prescription drugs and gives the package label insert for each. For example, indications and usage, contraindications, precautions, adverse reactions, dosage and administration, ingredients and appearance, etc. Go to "ingredients and appearance" at the bottom of the page and look up the drug ingredients, which includes the so-called "inactive" ingredients. These are often types of sugars, and armed with the Boston University sugars table info, you can decide whether the drug is low sugar or not. Some examples of sugars included in drugs, even those for digestive issues, are sucrose, lactose, corn starch, mannitol, etc. For example, Prilosec has sugar in it (I believe sucrose); why would they put sugar in a pill designed for digestive issues??? Daily Med is a U.S. National Library of Medicine database; the URL is dailymed.nlm.nih.gov. I kept tract of which drugs were ok for me and their inactive ingredients, and made an alphabetical list. For drugs that weren't ok, I made another list of their inactive ingredients that weren't on the ok list. Over time I came to learn the ok inactive ingredients, and could identify ok supplements as well using this information. I imagine the Boston U. Sugars Table would be useful in identifying sugars elsewhere such as in condiments. Hope this helps.
I forgot to mention if the drug has sugars in it that don't agree, you can get it compounded. When I was taking OTC Prilosec, I used the L-Alanine water with it and got by. The L-Alanine doesn't work with all sugars, so I get about 5 drugs compounded. It isn't cheap and naturally isn't covered by insurance, but it is worth it. The sugars in drugs and supplements add up and can impact the g.i. tract more than you realize. As a filler my pharmacists use microcrystalline cellulose, also a sugar, but much more digestible than most of the others. Also, eat drugs and supplements with food to help digest them.
@@guthealth, @jackiem95, @baponline, @pjss48, @redhead63, @sarcomasurvivor. I just posted info on names of sugars and identifying sugars in drugs and supplements. fyi
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).
Finally got a chance to check out all the links on low FODMAP eating (except for the Mayo eating plans – couldn't find). Unfortunately the items have much more sugar than I can digest. If a person's IBS is caused by something other than fm, or the person has fm on the mild side, these sites would probably work. Recipes had chocolate, salsa, garlic, beans, etc. which don't work for me. But, thanks for your informative e-mail! I may try linking up with a Mayo dietician.
This is why working with a nutritionist, at least at first, is so important. I have been on a Low FODMAP diet for two months and I am not eating any of the items you mentioned. No garlic, no onions, no chocolate and very little sugar. That is what happened to me at first. I went to the websites, read the food lists, and started to eat stuff that triggered more diarrhea. The diet starts very restrictive and slowly expands to other foods. It is important to follow a certain method for the diet to work. It is not just a matter of reading a list and start eating Low FODMAP foods. I almost gave up on the diet until I went to see the nutritionist and we adopted a method. Can’t emphasize this enough. It is how foods are first eliminated and then very slowly reintroduced. One can’t just randomly eat all the foods that are listed on the FODMAP diet. The diet must be individualized to your needs and specific problem, I.e., CDiff versus SIBO versus FM. It may be that some people can eventually eat onions again while someone else can never even look at onions again. You may be able to eat very little at first, which is what happened to me. I am very slowly now reintroducing foods. Garlic, onions and chocolate are not even in my horizon at this point. Still, I have not experienced diarrhea in two months and gained 10 of the 20 lbs I lost by following this diet under the supervision of a nutritionist.
Like you, I don't mean to say pelvic therapy can't be very helpful. I started with myofascial,release, which did help reduce the constriction or adhesions from multiple surgeries . I then began pelvic floor therapy, which showed I had a tight pelvic floor. This included biofeedback to help relearn how to relax/contract the pelvic floor muscles. All 3 of the physical therapists I saw were very knowledgeable and caring. However, for some reason I was experiencing more GI issues near the end of treatment, which may be totally unrelated to the treatment received. I want to stress that physical therapy can be a very valuable treatment approach.
Fructose diet is very difficult but you can manage the diet. No sugar at all including no gum, no honey no soda etc. Just look at the labels for any form of sugars if you cannot pronounce the ingredients on the package then don’t buy it because it most likely have some hidden sugars.
Also no fruits and fruit juices.
You can also goggle and y-tube for more information or you can go to a nutritionist and hopefully your insurance will pay for the Nutritionist. I have fructose so bad that I cannot eat onions, garlic, peas and carrots. I had to experiment with different foods. My tip off with Foods was to keep a daily log of everything you eat and see how you react. I would get the diarrhea the next day that was how I was able to tell what I can and cannot eat.
I have fm very bad as well. But, since I have the constipation version, I had no indication like diarrhea of what food was ok and what wasn't. I was always bloated and gassy to one degree or another until I got it figured out what I could eat and started using Phillips Milk of Magnesia on a regular basis. The latter also took care of the SIBO. Some food bothers my stomach immediately, like fruits and fruit juices, honey, soda, gum, etc. but others do not. I can't eat onions, garlic, peas and carrots either. Sometimes I can eat a few nuts, sometimes I can't – I figure it depends upon how much fructose is already in my g.i. tract, and there is no way for me to really know that. I agree – it is very difficult to manage, but it does become pretty routine when you aren't trying new things! Thanks for replying.
Thanks! After being on my own with fm since 2002 I may have already figured out most of what I can and cannot eat, but will probably try linking up with a nutritionist.
Forgot to mention I take 17 supplements/drugs due to various health conditions, so that is why I came up with a way to determine the sugars as inactive ingredients. They add up!
Totally agree with guthealth regarding the FODMAP diet. I'm still on the reintroduction phase of the diet and not quite yet at the total low-FODMAP diet stage. I have also found it is very important to follow a certain method for the diet to work….and to really strictly follow it. I have yet to cook any low-FODMAP recipes. I just make things that are in my current allowed list based on the program the nutritionist helped me define. I cannot have salsa, garlic, onion, beans, etc. yet. Not at this stage.
As you progress slowly adding foods, you may find that the quantity and frequency may also be a determining factor. For example, you might be able to tolerate 1/4 cup of beans but not 1/2 cup. Or you can have chocolate one day but cannot have it again for another 3 days. I know I can have 1 Hershey's chocolate kiss to satisfy my craving; but no more!
But I'm also one of the lucky ones that just has FM; no other major complicating factors.
One thing I have learned….and I think its because my system is so 'clean' now due to the elimination phase of the diet (which I extended well beyond the 8 weeks). In the past I could eat something and really not feel well and have issues, but now my intolerance reaction is a lot more intense. I accidentally had mayonnaise at a restaurant (big no/no; they use HFCS). I was in severe pain from the cramping. In bed for 2 days back/forth to bathroom. I'll never make that mistake again!
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