Diagnosed: Fructose Malabsorption; some questions, including weight loss issues
#364959 - 06/01/11 10:07 PM
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After having numerous tests done, I finally had one come back positive and that was for fructose malabsorption. Based on the results of my food log, this was one of the tests I really suspected would come back positive before taking it. I received the diagnosis today, and have been reading up on a ton of information online. The problem is that most of it is conflicting and I was wondering if some people with experience could answer a few questions I have.
First, is weight loss a possible problem with FM? Based on this site, it is listed as a symptom: Fructose Malabsorption . My symptoms almost match up exactly with the list given:
-frequent C, rare, but seemingly predictable D; no urgency
-bloating, gas
-gurgling
-gas pains
-abdominal pain; occasionally severe, but erratic
-fatigue
-headache
-brain fog, inability to concentrate at times
-weight loss, at times
-yawning and hickups, very predictable patterns
I have pretty much gone through all the main testing. I have not been tested for SIBO or had a colonoscopy, though. I was wondering if other FM sufferers had any of the above symptoms. Most websites tend to focus on the bloating/gas and diarrhea/constipation issues.
The weight loss has been an issue for me and I'm wondering if something like FM may be a problem. In the past 15 months, I went from 160lbs to an all-time high of 190lbs, gaining about 1.5lbs/week with a lot of effort on eating. Then, I dropped to 150lbs over the course of 4-5 months, with most of the weight loss occurring on vacations over that time. On vacation, I would eat any food, whereas at home I prepare all of my own meals.
Upon dropping to 150lbs, an adult lifetime low (I am 6'2, 29), I worked on putting weight on and gained 1 lb/week to get back to 175lbs. During this time, I followed a strict diet and was at home, preparing my meals. I just completed a 3 week trip to Italy, over which I lost 15 pounds to return to 160lbs, where I have stayed for a couple weeks. Given my recent 150lb low, I was working extremely hard at tracking calories and averaged around 2,900 calories/day. The drop in weight seemed abnormal, as it often has while traveling. I also tracked calories burned walking/sightseeing, and don't feel I should have lost as much weight as I had.
I tracked calories and food for this entire time frame. Anyone care to comment on this weight loss? Could fructose malabsorption be a culprit? It seems as if I eat food I know agrees with me and follows the IBS/fructose diet, I can gain weight. Immediately, and always while traveling, I seem to be losing weight drastically. Has anyone experienced anything similar?
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Likely IBS-C and Fructose Malabsorption
Undiagnosed and going through testing process
Edited by IBSHelpWanted (06/01/11 10:09 PM)
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Losing weight in fructose malabsorption (FM) may be caused by avoiding eating and/or chronic diarrhea with the resulting loss of nutrients. You don't mention diarrhea, though.
Other less commonly mentioned symptoms in FM, such as brain fog, fatigue or headache, might be caused by dehydration or nutrient (iron, zinc?) deficiences caused by diarrhea, or SIBO.
Disorders, such as lactose intolerance (more likely causing diarrhea than constipation) or SIBO, could be present either as a cause or result of FM. FM can be a complication of a celiac disease; in this case you would probably have problem with wheat and other gluten-containing foods.
Intestinal parasites may cause weight loss and nutrient deficiences with various symptoms, including yours. I mentioned this since you mentioned traveling.
You may want to discuss with your gastroenterologist about SIBO and intestinal parasites.
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I don't have IBS.
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Rapid weight loss is unlikely to be related to FM unless you removed a lot of foods containing lots of sugars and didn't replace those calories with other foods.
Did the weight loss begin before or after you were diagnosed with fructose malabsorption? However, since your weight loss seems to only occur when you are travelling but you gain weight when you are at home eating safely it doesn't sound like FM is the culprit. Since you track calories can you tell us how your caloric intake changes when you travel? You say don't think you should have lost as much weight as you have. Does this mean you were expecting to loss some weight when travelling? Have you talk to your GP about this weight loss?
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Can it not be that when you travel you are just generally more active and you use up more calories?
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now: stable through EFI+FODMAP dieting (no lactose/no fructose/some fructans and some polyols)
before: IBS-D(pseudo-diarrhoea), bloating, often unbearable pain esp from too much fat: Apr 2007- Dec 2010
FODMAPs: http://www.todaysdietitian.com/newarchives/072710p30.shtml
[I've tried VSL#3 -> I could tolerate v good amounts of IF (even with less SF), it worked great (but overall I find it too expensive)]
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Quote:
Rapid weight loss is unlikely to be related to FM unless you removed a lot of foods containing lots of sugars and didn't replace those calories with other foods.
Did the weight loss begin before or after you were diagnosed with fructose malabsorption? However, since your weight loss seems to only occur when you are travelling but you gain weight when you are at home eating safely it doesn't sound like FM is the culprit. Since you track calories can you tell us how your caloric intake changes when you travel? You say don't think you should have lost as much weight as you have. Does this mean you were expecting to loss some weight when travelling? Have you talk to your GP about this weight loss?
Sorry for the late reply guys, but I was actually traveling for almost the entire last month. In reply to the question on weight loss, I have always had to work to put weight on and have always been skinny. In the last two years, this issue has become worse. Even with making concentrated efforts to at least maintain my weight, I ended up reaching a low weight of 150, which I haven't seen in over 10 years (I am a 30 year old, 6'2 male).
I track my calories daily, and have kept very detailed records. After reaching an all time low of 150 pounds, I was able to get myself back up to 170 with a lot of hard work and very focused eating on foods I felt were good for IBS/fructose malabsorption. Most of the calories came from items such as chicken, rice, white tortillas, french bread, potatoes, fish/seafood, chocolate soy milk, orange juice, baked ruffles, and guacamole/hummus. During this time, I also felt much better. Not anywhere near perfect, but much improved over the past two years, and I believe the dietary changes played a role.
Based on my calculations, and my experience over the years, I believe I need around 2,400 calories or so daily to maintain my weight. My Basal Metabolic Rate is 1900, and I throw a bit of a buffer in there for basic walking, etc. I maintain a desk job, and outside of exercising, my daily work lifestyle is not very active.
Since I just took a vacation, I wanted to make another post with how I did weight-wise and see if anyone cared to comment on anything. This post is already getting a little long, so I'll create another one with how I did on my most recent trip.
Thanks a lot 
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Likely IBS-C and Fructose Malabsorption
Undiagnosed and going through testing process
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For my most recent vacation, I did everything I could to try and keep weight on. The trip was a work trip, and was to a place I frequent very often. Outside of walking from the hotel room down to a desk job or the pool, I did no exercise or walking. I was less active than I am at home even. For any time that I did happen to walk for more than a half hour total over the course of a day, I considered this exercise and tracked the calories and deducted them from the numbers below.
Here's a summary of how I did each week. I weighed myself at night each day. I have every food item and every ounce of exercise tracked. I really want to put this weight back on! I deducted any exercise/walking calories burned from the calorie number. I actually ate MORE calories, but simply deduct the exercise to get a net calorie number I always use:
WEEK___Weight, begin____Calories (less exercise)___Water (avg)___Weight, end
1____160____2,917____71 oz____154
2____154____2,847____69 oz____157
3____157____3,028____53 oz____158
4____158____2,985____64 oz____159
Overall, I pretty much ended up maintaining my weight on this trip. I lost a lot of weight at the beginning of the trip, as the scale dropped down consistently for the first 9 days or so. When we were all said and done, though, my weight stayed the same.
The reason this was a little disappointing to me is that, for the 30 previous weeks I had tracked where I did not vacation at all, and stuck with the foods listed in my other post (chicken, rice, potatoes, fish, etc), I averaged eating only 2,675 NET calories (around 3,400 calories/day with a ton of exercise) and was able to gain 1.4 pounds per week. Here, I ate around 2,900 net calories and lost a pound over the course of the month, while doing absolutely no exercise. This period occured after I managed to lose 20 pounds while eating the same number of calories, but from almost 100% food that I realized was making my symptoms much worse (before I found this board and had any diagnosis).
With the calories I ate, I expected to gain around 5-7 pounds over the course of the month based on my Basal Metabolic rate of around 1950. I am a bit of a hard gainer, but based on what I have seen over the past 30 weeks, I have gained 1.3 pounds per week with only eating 2,650 NET calories. The only times I have not gained were while I was vacationing, or the previously mentioned initial 20 lb loss.
The type of food is always the biggest change that happens while vacationing, and I thought it might have something to do with the weight loss/problems gaining weight.
I often times can feel a strong pulse in my stomach area. This pulse is normal, but has increased greatly in intensity in the past 2 years. When the intensity of the pulse in my stomach picks up, I can also feel it in my ear/head when I lay down on my side. It gets bad enough that I have to shift positions to fall asleep. Based on all of the tracking I have done on my 'symptoms' and how I feel, it appears that this pulse is not nearly as bad when I continually eat the good food I described earlier and have found out about on this message board. Is it possible, that the additional pulsing sensation is normal with IBS? It mimics my heart beat. When this happens, is it possible I could burn more calories than normal?
Also, I believe I have IBS-C and was diagnosed with fructose malabsorption. I very rarely have what I would consider D. However, I have started paying attention, and have noticed that foods known to be a problem with FM cause much softer stools than normal (my stools also float about 3/4 of the time if that matters). I wouldn't think it would be to the point of being considered 'D', but there is definitely a change and it is predictable.
All I have been able to determine, is that I seem to be able to gain weight while eating the safe foods for both FM and IBS, and eating around 2,700 calories/day, as well as more for any exercise at all that I do. Whenever I seem to stray from this, which is often times on vacation, I either lose weight quickly (15 lbs over 3 weeks), or stop gaining weight when I believe I should have based on the past year's worth of info. In summary, in the past 12 months, I have went from 178 lbs, to 152, back to 170, down to 155, and finally up to 160. I ate a fairly consistent 2,700 net calories weekly. The weight loss all occurred on vacation, or the initial 20-25 lbs I lost while at home eating a normal diet I was on before finding this board.
Is this normal, and have other people had any weight loss/gaining problems like this?
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Likely IBS-C and Fructose Malabsorption
Undiagnosed and going through testing process
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Quote:
Losing weight in fructose malabsorption (FM) may be caused by avoiding eating and/or chronic diarrhea with the resulting loss of nutrients. You don't mention diarrhea, though.
Other less commonly mentioned symptoms in FM, such as brain fog, fatigue or headache, might be caused by dehydration or nutrient (iron, zinc?) deficiences caused by diarrhea, or SIBO.
Disorders, such as lactose intolerance (more likely causing diarrhea than constipation) or SIBO, could be present either as a cause or result of FM. FM can be a complication of a celiac disease; in this case you would probably have problem with wheat and other gluten-containing foods.
Intestinal parasites may cause weight loss and nutrient deficiences with various symptoms, including yours. I mentioned this since you mentioned traveling.
You may want to discuss with your gastroenterologist about SIBO and intestinal parasites.
In the past year, I have had D less than 10 times. This is more often than normal for me, but not that often. I have frequent, hard, and small BM's daily and believe I am IBS-C with FM. I do notice a change in the softness of the BMs and have recently noticed that they seem to become softer after eating foods that are a problem for FM. I'm not sure if starting off in more of a constipated state could affect the intensity of the D. If someone started off with a more normal BM, maybe what I have, just slightly soft stools and not D at all I believe, would be very noticeable D for them. Maybe the IBS-C and FM work against each other in a way?
As for not mentioning D, this was a HUGE ommission on my part. During the three week trip originally mentioned in this thread, I had the worst D of my entire life. It lasted for about 3 days, and there was almost no noticeable form to any BM's. I did not really have any urgency, though, and rarely do. There was probably about 2-3 BM's daily, with no form at all, for about 3 days. It gradually returned to normal after that time. My diet was horrible for either IBS or FM during the entire duration of the trip. The D happened within the first half of the trip, and the food I ate only became worse afterwards with no returning D (but some softer stools).
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Likely IBS-C and Fructose Malabsorption
Undiagnosed and going through testing process
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Quote:
Can it not be that when you travel you are just generally more active and you use up more calories?
Hi Susie, I tend to be active while traveling and use up more calories. I always track my calories, though, and when I'm referring to my calorie consumption, I always make a note to talk about my net calories. I take and deduct any calories burned from exercise from my daily calorie intake. This way, I completely remove exercise from the equation and we can compare apples to apples, then.
After exercise (walking) on the original trip posted about in this board, I still averaged around 2,200 calories per day (total calories eaten were around 3,200/daily). This was less than normal by a lot, but should note have caused weight loss of anywhere near 5 lbs/week (15 total) I don't believe. In fact, if I were to go out at home, eat 3,200 calories per day, and try to walk off 5 pounds per week while only weighing 160 lbs, I think it would be extremely difficult to lose 15 pounds over the course of 3 weeks.
Before that trip, I was running about 20 miles/week, lifting 3 times weekly, and swimming/doing other exercise a couple times a week. I stopped all of that and ate the same number of calories on the trip that I had been eating, and gaining 1.3 lbs/week on even with all that exercise. I replaced all of that exercise with brisk to moderate walking typically done while sight seeing and went from gaining 1.3 pounds per week to losing 5. It just seems odd to me. The only change was the fact that I was vacationing and eating horrible food for IBS/FM while on the trip (I had felt great leading up to it, and actually felt decent on the trip as well).
My average diet consisted of:
Whole, meat or margherita pizza
Gelato/Ice cream/desserts
American style breakfast
Pasta, or gnocci
Salads w/ EVOO and Balsamic
Huge McDonalds meals
Candy/candy bars, etc
I made the focus of the trip to keep the weight on before leaving, and decided the way to do it was to eat high calorie foods, frequently and not care how I felt. I consistely felt worse on the trip, but overall, I felt ok and still much better than I had been 9 months ago. I could tell the food affected me, but for just a 3 week period with a lot of walking being done, it was manageable.
I did have horrible D for a few days, as mentioned in another post. However, I tend to 'feel' better on days that I have D (rare) than on days I seem to be constipated.
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Likely IBS-C and Fructose Malabsorption
Undiagnosed and going through testing process
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can u tell me what a normal daily food intake is for you? i fall into the same category as you for ibs/fm and need help gaining weight...i just need some help!!..what is something i could eat often with no issues that will put some weight on me besides bread or tortillas..these are getting old...and i know eating a loaf of french bread every week cannot be healthy anyway...thanks.. 
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Well ,general IBS rules for me demand
-no alcohol/caffeine
-fat content of meals restricted to around 20-25 per cent of calories per meal
-IF (insoluble fibre) limited, no whole grains except for oats and quinoa and IF content of foods balanced out with SF (soluble fibre) (http://huhs.harvard.edu/assets/File/OurServices/Service_Nutrition_Fiber.pdf is v helpful)
plus we have
-the FODMAP approach simultaneously
but if you look at the FODMAP chart there are separate columns (see Syl's signature for that chart), you may be fine with some columns. No lactose or fructose for me, fructans are v restricted cos I get too much bloating from them, polyols and galactans are OK for me. (for galactans you can also try Beano which helps with the bloating). So this is me, you may be different, you will have to experiment.
I eat a really really wide variety of foods and I eat extremely healthily, secret is in their favourable combination!
carbs:
non-wheat: white rice, puffed white rice cakes, potatoes, pearl barley, oatmeal, dried cereal: rice krispies (no whole grains in there!), quinoa (careful, has more IF than SF), maple syrup
wheat-based: this cereal sometimes: http://www.mysupermarket.co.uk/asda-compare-prices/Breakfast_Cereals/Doves_Farm_Organic_Gluten_Free_Cornflakes_375g.html
couscous, pasta, white bread, tortillas (you may not have to restrict these , I do, too much bloating)
fruits/ juices:
-orange juice (no pulp)
-pomegranate juice - I live in the UK: http://www.mysupermarket.co.uk/tesco-price-comparison/Longlife_Fruit_Juice/Pomegreat_Pomegranate_And_Blueberry_Juice_Drink_1L.html (no pulp and no apple juice in there, thank heavens)
-semi-ripe bananas
-cherries, (dried) apricots, peaches, plums (these fall under polyols, so try them to see if you have trouble. I don't, used to think otherwise, so you too may be pleasantly surprised!)
-red fruits, berries (they are high in IF, I always eat them with a soluble fibre supplement (SFS))
(all these fruits make a wonderful addition to oatmeal which is v plain and tasteless for me otherwise)
veggies:
-cooked carrots, tomato puree/tomato paste
-black beans (careful - galactans)
-spinach, kale or other leafy greens (with enough SFS!)
-broccoli (I have no trouble as long as it's really well-cooked, and I never eat the stalk, merely the florets)
-peeled roasted peppers
these veggies are the absolutely most healthy ones available (due to high anti-oxidant content on top of them being veggies so naturally full of vitamins and minerals), other veggies which I eat are also healthy even if not as much:
-parsnips, swedes, pumpkins, sweet potato, zucchini (ie courgettes), cucumbers (on their own)
-mushrooms, cauliflower (with SFS)
(also chickpeas probably are in the first group, not had the chance to experiment with them yet but they are v good for you)
there's other beans/lentils that you could try but they contain overall more IF than SF ie probably should eat them with SFS (whereas black beans are not only great cos they have the most antioxidants, but they are also fine for me on their own with additional SFS)
milk substitutes:
-rice milk, soy milk, oatmilk
protein:
-fish, chicken breast, shrimps (and of course, the protein from soy milk)
fat:
-oils
-ground nuts (v healthy!) (but high in fat and have to be balanced out with SFS due to high If content)
-peanut butter (not a nut, but a legume, SF=IF)
-cocoa powder (antioxidants!)
thought you may want to know that vitamin-wise I am taking
-a vitamin B complex supplement - without food
-flaxseed oil tablets which has vitamin E in it - with food
-omega3 fish oil tablet- with food
-zinc every other day -with food
-iron - with orange juice (so it's better absorbed)
-calcium and vitamin D- with evening meal (may faciliate sleep)
(I take these at separate times during the day, usually with at least 2 hours between them)
for me SFS is Benefiber in the UK. no inulin or anything added.
that's it really, so fruits and veggies are of course extremely healthy, but we need grains/carbs too, and you especially if you are trying to eat more! btw my brother's required grain-carb intake consists of bread 80% and he's v fit/healthy.
if you have a sweet tooth I suggest you try those fruits, nice calorie boost!
Best of luck, hope this helps!
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now: stable through EFI+FODMAP dieting (no lactose/no fructose/some fructans and some polyols)
before: IBS-D(pseudo-diarrhoea), bloating, often unbearable pain esp from too much fat: Apr 2007- Dec 2010
FODMAPs: http://www.todaysdietitian.com/newarchives/072710p30.shtml
[I've tried VSL#3 -> I could tolerate v good amounts of IF (even with less SF), it worked great (but overall I find it too expensive)]
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