Tuesday, August 5, 2008

Fructose Malabsorption Diet

UPDATE on December 12, 2011: Thank you for reading about our experience with FM.  I have begun a seperate blog that focuses specifically on FM and has more up-to-date information.  You can read more about FM at:
Life with Fructose Malabsorption
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The girls went to Grandma's for a few days last week/weekend. Before they left I had to prepare a list of foods that were acceptable for Rebecca. I mentioned to a few people who see her more frequently that I would be posting it on here so that I don't have to remember a list each time. So below is the list.
Today we adjusted Rebecca's diet, whether temporarily or permanantly we do not yet know ... I will write more on that later. I decided to still post her diet as it may be helpful to someone else out there who is looking for information on Fructose Malabsorption or also known as Dietary Fructose Intolerance. The following diet is a very restritive diet that Rebecca has been on for almost 4 weeks now as we struggle to make her feel better. This would be the type of diet a person who had just been diagnosed with Fructose Malabsorption would start with and once feeling better they would slowly reintroduce various foods on the "safe list" to see what they can tolerate. For the first week Rebecca's diet also consisted of no vegetables ... obviously this is not a healthy balanced diet and so after a week we had to reintroduce a few of the veggies that should be okay in small quantities. At this point in the diet we are also striving to keep all her sugar intake as low as possible, and are therefore relying more on various alternative sweeteners.
Later I will post more about how we ended up here and where we're heading for now, as well as various links for anyone who might be trying to find further information about Fructose Malabsorption (Dietary Fructose Intolerance)
Rebecca’s Current Diet ~ Fructose Malabsorption

Some Basic Fructose Knowledge
● Fructose is a simple sugar (monosaccharide) which the body uses for energy
● Sugar (sucrose) is made up of 50% fructose and 50% glucose. and so she should only consume limited amount of it.
● Glucose is needed in order to process fructose - so glucose (or dextrose) is good
● When balancing a fructose diet you must look for items that have a higher level of glucose in
them then fructose (and unfortunately this is not general knowledge and takes time to learn)
● Fructans are chains of fructose and wheat has fructans in it therefore making it unsuitable for many who have Fructose Malabsorption
● Sweet Tarts are almost pure glucose and so for Rebecca they are considered medicine.
-if it is likely Rebecca will not be able to maintain her diet or is going to eat something that she probably shouldn’t have she can eat SweetTarts about 5-10 minutes before having the food in order to give her system extra glucose to process the incoming fructose
-this will only work for excess fructose but not fructans (wheat and onions)
-although this helps it is not a cure ... the body still has a total fructose tolerance level and no matter how much glucose you consume it’s going to suffer

No-No Items
No Fruit
No Wheat as a main ingredient. It should not be listed as one of the first 5 ingredients.
No Candies (except SweetTarts)
Honey
High Fructose Corn Syrup (HFCS)
Vegetables
-onions (you can cook with onion in large chunks for flavouring and then remove the onion pieces before consumption
-tomatoes - this includes sauces, ketchup, spagetti sauce, salsa
-asparagus
-beans
-peppers (maybe just as few in a salad)
Sugar (sucrose) - try not to have this listed within the first 3 ingredients - not always possible, but limit overall sugar intake as much as possible
Other Ingredients to avoid if listed as first 5 on ingredients list:
-fructose, honey, corn syrup solids, high fructose corn syrup, fruit, fruit juice/fruit juice concentrate, sorbitol (or any items ending in “ol”), sucralose, tomato paste, onion

So-So Items (small amounts)
brown sugar (sparingly)
corn syrup (sparingly)
Vegetables
-peas (this is the lowest fructose vegetable and she likes them lots)
-lettuce
-carrots
-cauliflower (prefers raw)
-broccoli (no stems) (prefers raw)
-cabbage
-cucumber (better without skins)
-corn (very small amount)
-spinach
-pickles
-celery
Banana - she is just trailing this now, but is must be eating with a meal and she can only have ½ or 1 every other day
Potato Chips - regular, salt and vinegar, dill picklet
Cheese Puffs/Twists
corn chips/tortillas
doritos/nachos

Okay Items
maragrine
eggs
white rice and white rice pastas (brown rice supposedly is not good)
oats
rye (so far I haven’t been able to find 100% rye bread ... but I’m doubting she’d like it anyways)
gluten free breads
rice cakes (she likes these and they function as her bread)
meats (checked pre-seasoned meats as some have corn syrup)
cheese (she doesn’t like it by itself but it’s allowed mixed in things)
cheez whiz
plain cream cheese
garlic spread (a favourite - remind her to brush her teeth after)
Pepperettes - check ingredients, some have no sugar some a fair amount of sugar
- Schneiders Original Pepperettes are safe
mini rice chips/cakes -cheese, salt and vinegar, dill pickle
mayonaise (not whipped salad dressing/miracle whip)
yogurt (plain yogurt -which she doesn’t like ; or Astro Fat Free Zero Vanilla flavour
plain nuts and seeds (she’s not to fond of these)
rice crackers
SweetTarts



Basic Meal Ideas
Breakfast
Porridge/Oatmeal with a small amount of brown sugar
Puffed Rice, Millet or Corn (find in Organic Food Section of Stores)
Eggs on RyeCrisp (she doesn’t really like these) or a Rice Cake
Bacon
Gluten Free (GF) pancakes
GF Waffles


Lunch
Rice Cakes with garlic spread (only allowed one cake with this), peanut butter, liversausage, egg salad
GF Bread - very dry and she doesn’t like - load on the toppings if using this
Soup made with meat, boullion cubes, rice noodles and a few carrots and celery
Cream of Chicken Soup
Macaroni and Cheese - use cheese package from Kraft Dinner with rice noodles


Supper
Potatoes French Fries with ranch salad dressing
Meat and/or fish (non-breaded and check seasoned varieties to make sure no corn syrup is added)
Veggies - small amount or do peas and a tiny serving of another okay veggie
Salad - caesar salad is fine without the croutons or a regular salad and she’ll pick out the tomatoes
White rice with a meat based sauce and few okay veggies (no onions or remove onions and no tomato sauces) or something using cream of chicken. Rice with margarine and brown sugar is something she also likes
Rice pasta with a meat based sauce and few okay veggies (no onions or remove onions and no tomato sauces) or something using cream of chicken
Tacos - no salsa or tomato but can have other salad toppings


Snacks
Veggies and dip
Vanilla Low Fat Yogurt (kind that is sweetened with aspartame or splenda)
GF bread sticks with ranch or caesar dressing or cheez whiz
Rice crackers
GF Crackers and Cheese (not to fond of this)
Potato chips
Cheese Puffs/Twists (only small amount as made from corn)
GF baking that are low in sugar (haven’t really found any yet - many are sweetened with pear juice or honey)

Drinks - she must drink lots as her diet currently has a lot of grains/cereals
Crystal Light Drinks Water
Milk (only plain, no chocolate or strawberry flavour)
Tea (preferably decaf or herbal like Roobois - she hasn’t notice when I gave her this kind, but doesn’t like much herbal varieties) sweetened with alternative sweetener/packaged sugar


Dessert
Sugar-free Jello with nutriwhip
homemade popsicles - 1 cup (or a bit more) boiling water with sugar free jello and add yogurt
very small amount
of ice cream (after having sweet tarts first)

80 comments:

L.V. said...

Wow, can't get too much more specific there!! That's soooo limited! Good idea to post the list...is that really all Rebecca can have right now? Or is this the "easy" list for other people??
Laura :)

Steph said...

Yes that is pretty much all that she eats right now. For a house that enjoys variety in meals this has been a bit of challenge for her and for me to think of things to cook so that she doesn't feel left-out all the time.

We do allow a few other odds and ends here and there, based on how she's done for the day. Usually things that seems okay, but are sort of on the iffy list ... like Presidents Choice (only PC brand) Sweet and Salty Granola Bars ... she loves these and the first ingredients appear okay, but there are still iffy ones on the list, so we eat it more as a treat. Or sometimes using vegetables that have conflicting information on whether the are good or not just so that we can make a more interesting meal.

She also has the occasional treat which is simply not good for her, but if she's done well on the diet the rest of the day we allow her to eat her Sweet Tarts and indulge a bit ... sometimes this works okay, other times not so good.

She seldom complains about the diet and works hard to maintain it. So we know her pain is real if she's willing to cooperate so well. Occasionally she'll ask if she can binge on some SweetTarts so she can enjoy something she likes, but mostly she just sighs and finds something from her cupboard of food.

Chad Higgins said...

I just figured out I have HFM. I know cause I was turning yellow and my liver hurt. All my life the doctors could never figure it out so I didn't bother going to the hospital.

You have the best explaination of the HFM diet I have seen here.

I had other symptoms such as depression, lack of energy, and diarheah.

Steph said...

Chad

I hope that you are finding the necessary treatment, resourse and support to cope with the changes necessary in your diet and lifestyle and that you will quickly feel better and more symptom-free.

All the best.

Eliza said...

Hello!

My name is Eliza, I am in Melbourne Australia and I came across your post (a few times now actually as it is always good to refer to another person who is or is caring for some one with Fructose Malabsorption).

I was diagnosed when I was 21, after being diagnosed at 11 with 'severe Irritable Bowel Syndrome' and have been in a lot of pain after eating from then until I was diagnosed with FM and changed my diet.

I look it further and cut out all gluten, dairy and fructose, but 3 years on I have introduced some dairy again (no straight milk or high fat dairy) and some glutinous products such as natural chips cooked in oils that have been exposed to gluten.

Over time I have found tomatoes are fine for me, same with lettuce and zucchini. My advice as your little one grows up, is that as her body gets used to being healthy with no fructose, gradually she will be able to try more foods and can cope.

My advice is that in time introduce 'vegetable enzyme pills' which are a natural product which help break down products within the body, did WONDERS for me and I hope one day it will help your family.

Best of luck, Eliza

Steph said...

Hi Eliza

Thank you very much for your comment and information. I willk eep the vegetable enzyme pills in mind. It is always good to hear from someone who has had a few years experience, especially for me since I have to go by what my kids say and they don't always know how to express how they are feeling.

As it turns out Rebecca's FM really is not a health concern and is only a very minor problem. But we are still dealing with Matthew and fructose restrictions as we have not yet been able to figure out if he has a mild form like the rest of is, or if his is more serious.

If interested it would be great if you joined the new FM Group (listed on the sidebar) as we could always use people on there who have dealt with this issue a bit longer.

Thanks for your comments and it's great to hear that finding out you had FM finally relieve those long term IBS symptoms, that must have been a relief and I imagine feeling better is well worth the diet restrictions.

All the best

Julie in Wisconsin said...

Your blog has been SOOO helpful! Thank you so much. My son, 5, was diagnosed yesterday with fructose intolerance. I know it's only been a day but I've been frantically trying to understand what I can feed him so that he will finally feel better. Again, thank you so very much! *hug*
~Julie~

julieelizabeth said...

Just wanted to pass on one thing I learned from my nutritionist a couple days ago. WalMart is now adding high frutose corn syrup to their brown sugar.

Hope everything is going well for you and your family :)

Julie

ps. THANK YOU for the tip about sweet tarts. I didn't realize that it was almost all glucose. My son will be so happy to have this as a treat!

Steph said...

julieelizabeth

Are you in the US? I am guessing this as HFCS is much more common in the US then in Canada. I will keep an idea on the brown sugar though, just to see what is coming through here.

Thanks for the heads up.

Sharon said...

Have you heard of FODMAPs? I avoid foods high in fructose, foods with fructans like onion and garlic, and sugar alcohols like sorbitol. I am also lactose intolerant so I use lactose reduced milk. In Australia, a nutritionist, Sue Shepherd, has done a lot of work with FM. There is a yahoo group with information http://health.groups.yahoo.com/group/fructose_malabsorption_australia/ that has been very helpful for me.

Sharon in Canada

Anonymous said...

Stephanie,

My son was diagnosed with Celiac Disease a year ago and although very strict on the gluten free diet (also went dairy and soy free), he continued to have issues. I am experimenting with eliminating fructose and fructans to see if we can relieve the nausea, fuzzy head, and excessive burping that keep him feeling down many days.
Thank you for your site and posts. I'm still a bit confused on what is okay and not okay, as many sites seem to have contradictory advice. Is Corn Syrup itself bad or just HFCS? Also, is Maple syrup safe?
Do you think having organic ketchup in a small amount on something with a glucose tablet to balance that would be okay?

Thanks for your advice,
Tammy

Parent in Cleveland, OH said...

I just stumbled upon your site and found it very helpful. Thanks for taking the time to detail all of this information. My son has fructose malabsorbtion and we've been trying to find some "kid-friendly" fruits for him to enjoy. He LOVES fruits, so this has been an adjustment. Do you have any recommendations on fruits? It seems like we just rotate between organic yogurt (which obviously isn't really a fruit) and Craisins. Any help would be greatly appreciated. Thanks!

Steph said...

Hi Sharon

Thanks for your comment about FODMAPs. I am familiar with this and have done some reading on it, aswell as a bit of trialing to see if it was effective for us. For those who would like to know more about FODMAPs I have included a few links.

http://www.healthhype.com/fodmap-diet-foods-to-avoid-in-ibs-bowel-disorders-with-bloating-and-gas.html

http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/BarrettArticle.pdf

http://www.healthhype.com/foods-high-in-fructose-sorbitol-fructans-and-fodmaps.html

I am also familiar with the Australia FM Support Group. I was previous a member of it, but left when things got out of hand with the moderator (who I understand has since been replaced by someone else). The group has a lot of information (almost too much as a lot of times I found it more confusing because they talked about so many health things other then FM or that the members were also suffering from) but is extremely ridget on what is accepts are a proper diet and not very accepting that some of us are simply able to handle more or different things then others. This is why a new FM group was started ... to which I have a link on the side.

Thanks for your input, also on the new FM group (I seen you joined it :) While our family is no longer dealing so drastically with FM, we are fully aware of the challenges that come with such a diagnosis.

Stephanie (also in Canada :)

Steph said...

Hi Tammy

I'm sorry to hear that you are still struggling with your sons health, even after eliminating various things from his diet. I most certainly understand the frustration and confusion that comes with trying to figure out food allergies, especially when there are multiple allergies and it's a matter of figuring out the right combination of foods that are causing the problem.

When it comes to corn syrup the best way to stay clean is to avoid it all together as most of the time you do not know what type of corn syrup it is. HFCS is more the problem, as corn syrup itself if made of glucose (or corn dextrin), but since ingredients lists don't tell you how much the ratio of glucose to fructose is the general rule of thumb is to simply avoid it all together. It would also be wise to avoid it if you are still in trail as if there is a very high intolerance of fructose then no matter what the amount of fructose found in corn syrup will be too much ... even if the glucose ratio is higher. At the same time it is not uncommon that those with FM cannot tolerate corn or can only tolerate a small amount of corn ... another reason corn syrup (and dextrose) ends up on the no-no list. That being said we have found that Crown makes several kinds of corn syrups and one of them is made strictly of glucose and so we use that in our house.

In technicality maple syrup is suppose to be okay, altho I believe that many FMers will say it doesn't work for them. This would be something you would wait to try until after you have been stable for some time.

Organic ketchups are made usually made with pure cane syrup making them okay for FMers ... only is you are able to handle tomatoes. It is interesting that many FMers will comment that they can eat certain kinds of tomatoes, eg they can tolerate canned tomatoes but not fresh tomatoes, or the other way around. Tomatoes are an iffy one.

The glucose tablets (or smarties or sweettarts depending on the country you are in) seem to work for some people and not others. This again probably depends on the persons overall fructose tolerance. If the body has a very high intolerance then extra glucose likely really isn't going to do any good.

It is definitely hard to determine what is okay and what is not. To be honest I have revamped my okay list many times for my son. Rebecca in the end went completely off the low-fructose diet with no adverse effects ... rather confusing since she tested positive for FM. Our son Matthew remained on a very strict diet for almost a year before we started easing up. While the list in this post gives ideas, I have to admit that I would be even stricter if I were starting off (as we were with Rebecca for the first week).

**** continued in next post ****

Steph said...

Some things I would change:
**brown sugar has molasses so it's better to go with plain white sugar, or the best would be pure cane sugar
**I would not give celery, corn or carrots and would probably only give cucumber and pickles occasionally (I know this leaves very little vegetable)
**corn chips and items made with corn might not be such a good idea until it's firmly confirmed whether a person can tolerate corn
**buy gluten-free oats at first until it's establish how tolerate a person is to wheat as some can eat wheat some can't handle any
**skip the garlic spread and garlic
**I'd probably stay away from aspartame at first so this would rule out the yogurts (homemade is the best option) and crystal light drinks. For my son I now use Kool-Aid and a reduced amount of white sugar (cane sugar could be used too)

It's difficult at first, there's no denying that. It's confusing and frustrating. For us our battle was made more difficult as we did not realize our son is rice intolerant ... is was rice that was making him the most sick ... and we were feeding him a lot of it because he was on a gluten-free diet. Poor guy!! What a difference since we discovered this - a new kid, and now fructose is a more minor issue in his diet ... once again, even though he tested positive for FM.

I hope you are able to find answers for your son. I feel for you!
Steph

Steph said...

Hi Parent in Cleveland, OH

I hear you on finding a "kid-friendly" FM menu ... it's hard enough finding an "adult-friendly" menu :(

We have not tried cranberries in our house, I'm not even sure where they sit on the lists. My son too LOVES fruit (and hates vegetables) and it sure makes it hard to keep him on his diet.

When it comes to fruit the order we introduced them was:
**bananas - starting with 1/2 a banana - these are pretty much a staple in our home now, used often to rotate with less adviseable fruits
**strawberries - just 1 or 2 at first and see how they are tolerated
**rhubarb - high in glucose - we would mix it in cakes/muffins, and Matthew would even eat it plain at times
**raspberries and blueberries (blueberries in recipes - but Matthew reacted to them)
**pumpkin (again in recipes - pureed pumpkin)
**orange juice - 100% pure - we would water is down so it was only 1/3 cup oj and 2/3 cup water
**peaches/nectarines - only small amount, maximum of 1/2
**apricot - I never gave him fresh apricot but we had a pure/sugar-free jam that we used

Our family is only mildy effected by FM so we've done well and are able to eat a wide variety. Some people can't eat any fruit or only have one or two they can tolerate. Matthew is our hardest FM case so I usually go by him when talking about FM.

For the longest time Matthew was strictly on bananas (and only 1/4 at a time) every 3rd day and then slowly every other day, and eventually up to 1/2 a banana at a time. From what I understand bananas are one of the safest FM fruits. Matthew then spent a long time on just bananas and strawberries as fresh fruit and the other fruits we slowly worked with more in recipes as fruit in recipes sure makes GF products nicer. Matthew now eats wheat without a problem (as I said our family is only mildly effected) which sure makes it easier for cooking/baking. We also have been fortunate that aspartame seems to be tolerated in our house (I'm the only one who seems to have a bit of an issue with it). I'm not a fan of aspartame and we try not to use it too much but it is helpful in giving a few more options for drinks and desserts.

Hopefully that gives you some ideas. You might want to try joining the FM group on the side and see what information you can gather from the site. There are links and sample menus on the site. You may also want to consider buy the book Fructose Malabsorption: The Survival Guide (http://fructosemalabsorptionhelp.com/). I have not received my book yet, but I have heard great reviews about it. This is written by a person who has FM (a more severe form) so it's a first hand account of the struggles that comes from FM.

Hope some of this helps and you're son is able to tolerate a few more fruits.

Parent in Cleveland, OH said...

Thanks for the information, Stephanie. I appreciate your help! Take care!

Robert said...

I have a two year old son that I suspect has fructose malabsorption problems. I have found that the doctors in our area are not familiar with this diagnosis. We are considering going to the Cleveland Clinic. Does anyone know of doctors in the midwest that treat FM? So glad to find this site so many sights have such limited information. Thanks Ann

Steph said...

Hi Ann

You have found what most people find out when they discover they have FM or possibly have it. While some doctors are wise enough to know to test for it, very few actually know how to treat it, or how to guide a patient with their diet. The same goes for dieticians. FM is something you pretty much have to learn on your own - at times like this one is very thankful for the internet and support groups.

The Cleveland Clinic would be a place to start. As I am not for the US and not familiar with the various areas and doctors I might suggest joining the Fructose Malabsorption Support Group (link is posted on the sidebar). There may be someone on there from your area who can give you some advise on doctors. And if you can't find anything that way there is various information (different diet plans) and assistance on the site ... and hopefully someone can help you out with whatever questions you have.

Wishing you all the best on finding some help and answers for your son.

Anonymous said...

Hi, my name is Clare and I'm english but I actually live in Turkey. About 7 years ago I realised that I was lactose intolerant and I felt great following that diet, then 2 years later I got really ill again and that turned out to be gluten and once again felt like a new woman, but then recently I've been feeling rather ill again, and one day last week (while snacking on dates) thought to myself 'surely there can't be gluten in fruit' thats when I came accross Fructose Malabsorption OMG I cannot find anywhere with an understandable list, I've only just come accross your site and wanted to thank you for providing something understandable. All I have to do now is put it into practice. Being in Turkey I feel so isolated from help and 'specialist food' as cannot even get gluten free bread here, although the Doctors in England wern't much help to be honest!! Will have a propper look around your site now, once again thank you so very much Clare

Suzanne said...

Hello,
My sympathies go out to your daughter being on such a restricted diet, especially being so young. I found your site since I'm brand new to the fructose malabsorption diet. However, I have been on a gluten-free diet for about five years. You mentioned that the gluten-free bread you've found has been very dry and taste-free. Udi's and Glutino both make excellent gluten-free bread. Tinkyada makes a fantastic rice pasta that tastes almost like the real thing.

Thank you for taking the time to post all this information on fructose malabsoption. There is very limited - and often conflicting! - information out there, and I really appreciated reading your first hand experience.

Michelle B said...

My 3 1/2 year old daughter was recently diagnosed with FM, and my mind is still spinning from what she can and can't have. We call her the "fruit monster" as she LOVES it, especially any type of melon. We will be testing for lactose later this month. My fingers are crossed, but I'm pretty sure she'll be positive for it too. Your diet guidelines are very simple and direct. Thank you so much for taking the time to get it out there, especially for parents like me who want to rip their hair out while grocery shopping since sugar/HFCS seems like it's in almost everything!

Anonymous said...

I love the sweet tart idea especially for special occassions where sugar is impossible to avoid. How many does she eat before?

macocha said...

Thanks for your list. Can I just say I hate this diet and it has lead to more tears than not. I also have a son with Celiac. This diet by far is the worst one. I dread stepping foot into the kitchen and telling my daughter she cannot have something; she is a very picky eater.

I know this post is old - but still...thank you!

Steph said...

Clare

I am sorry it has taken me so long to reply. I hope that in the meantime you have been able to get a better understanding of FM or found a support group (check out the link on the side of my blog). It is definitely hard when you are in a different country as every country produces its foods differently. Here in Canada we can have the exact same food brand as the US but have completely different ingredients, so even when talking to our "neighbours" we have trouble sharing ideas and product advice. I know that some people do rely much on the internet (amazon I believe is a good place to start) for some of their foods. I am thankful that I enjoy cooking and baking since one must rely a lot on making foods from scratch when there are food intolerances in the house.

Wishing you strength and hoping you find a good doctor or support group to help you

Steph said...

Michelle B

I hope that things are working better with your daughter and here FM now that you've had some time to work with it. It is definitely difficult and frustrating at times, especially during the beginning times. We also quickly learn that everyone is very different in what they can and cannot handle. Our family has been very fortunate that we seem fine with wheat and corn ... two very helpful products on maintaining some variety in our lives, even if we try to use it on a limited basis. I realize that many have it much more difficult as the FM we deal with seems to be somewhat more mild.

All the best

Steph said...

I have to be honest when it comes to the Sweettarts and say that I'm not really sure how helpful it was. We no longer do that. We found that there was no decent gauge or way to tell if it was helpful. On the other hand we didn't see any real signs that it wasn't helpful so at the beginning we found that it was helpful for her to eat these simple for her to feel there was some sort of benefit or bonus to having FM because she could eat candies when the others couldn't. We usually allowed her 2-3 candies before having something higher in sugar. Others have commented on how this does help them, so it is worth trialing to see how beneficial it is. But when it comes to candies or treats we tend to stick to candies like Sweettarts, Shockers (a sour version of Sweettarts), FunDip, Nerds, Runts, which are made of mainly dextrose/glucose.

Steph said...

Macocha

I am totally with you on hating this diet. It is so extremely frustrating to try and figure out what is okay and what is not and what has set off the last "episode" when you thought you were eating okay. I still enjoy the kitchen though, I just have to look at it from a new perspective and try to go beyond what I'm used to. I hope that things have gotten better for you and your daughter is adjusting and finding that feeling better makes it worth not being able to eat so many things.

Kula said...

My son has fructose malabsorption and we are still struggling to find a diet that he can tolerate. He loves fruit of course but also crunchy carbs. He can't tolerate corn and only small amounts of potato. He has not done well with oats, rye and wheat in the past so we just avoid them. I am wondering about the rice cakes you mentioned. I can only find brown rice cakes or crackers. I have looked everywhere locally and online for white rice snacks with no luck. Was your daughter able to tolerate brown rice snacks? This diet is incredibly difficult to manage for a little one. Any suggestions are appreciated.

Steph said...

Kula

In our house we appear to be quite fortune as we can handle wheat and corn. My daughters can handle brown rice okay. I have trouble with rice flours, even white rice flour, but can eat white rice (a little perplexing, still haven't come to an answer on that one). Our son, Matthew, cannot tolerate rice at all. Since I realized that I can handle white rice but not rice flours I wonder if he has the same, but at this point I do not feel like challenging him on it as we are working fine on the no-rice for him.

So the rice cakes I mentioned are brown rice and at the time I was not aware of the brown rice issue, that seems to have become more of a predominant issue in the last couple years where it has come to realization that many FM cannot have brown rice. Again, our daughters seem fine on it. The rice crackers we get simply say rice - not even rice flour, just rice. So I have no idea if they are white rice or not since they are not effected by it and for others it would mean trial and error to see what type of rice it is.

When it comes to pototoes my first question would be if they are white potatoes. It appears to be that white potatoes are the ones most tolerated by FM, the other types are not so good. Here also we are lucky as we can tolerate potatoes fine, as do many with FM ... which is a life saver!

I feel rather inadequate to help with suggestions as we can tolerate so much more then your son is able to. How does he do with barley? Would you be able to make barley soups and soups made of white rice noodles (also hard to find, but I can find them in spagetti noodles). Snacks would be difficult and would likely require some learning of Gluten Free (GF) cooking and then reducing the sugar. Watch that you buy only pure cane sugar (regular white sugar can be made of cane or beets). In Canada this is easy to get, but from what I understand other countries often sell beet sugar, which is a no-no, as there main white sugar and you would need to look specifically for cane sugar. I have little experience with GF cooking. Matthew was on a GF diet for a period of time before we knew he was rice intolerant, but it has been some time since I've done that so my memory is a little vague in that area

I'm afraid I am not much help at this time. Please check back again though as in the next month or so I hope to do a few updated entries, maybe I will get some new ideas as I am writing. I strongly suggest joining the support group at the top of the FM Links on the side as there are many people there with different tolerances and they may be of better help.

MK said...

Hi Steph,

I recently began having problems eating alot of the sweets and most foods that i love to eat no matter how basic.
I realized that coming to a more restricted diet helped and noticed that none of it had fructose of any form in it so i am in suspicion that might be what my problem is.

Some ideas to try to eat and drink are cold white grape juice, chicken, sugar free jello pudding, sugar free jello, or i found fat free hot chocolate is also a safe drink.

I'm okay with potatoes and corn but fruits don't work out so well.

I'm not sure if this will help anyone else out there but trying Emetrol before a meal to help with nausea and things like that or a gas medication to keep from having alot of burping might make things a little bit easier.

I'm still working on getting myself under control but am seeing a dr. here soon, so hopefully that will also help.

It must be very difficult for you to deal with your children having all the eating restrictions because i know its hard enough for just me.

I must also say thank you for posting rebeccas eating list online as some of the ideas have helped me find something different to eat before i got bored with eating the same foods everyday.

hope some of this helps someone.

MK

Judy said...

I much appreciate your taking the time to put this website together to share with others. My 15 year old son has recently been diagnosed with FM. He has been sick with chronic diarrhea for the past 8 months. We are seeing a nutritionist this week to find out how his diet will look. The info you have provided here has been a good insite into what to expect and give my son some hope.

charlinde said...

Thank you for your post~ my entire life I thought I was lactose intolerant with IBS..finally found a doctor to test me for everything. At 35 years old, I find out I have a FM. I was never a person who loved sweets and I never liked chocolate milk as a kid...in hind site: it was my body telling me something. The only hard part for me is the veggies. I don't mind the fruit...but tell an Italian who loves to cook that she can't have tomatoes and onion...I suffer those days. I am exited to learn about the sweet tart and veggie enzyme supplement ~ Im going to try it...makes sense. SO again...thank you for all of your information..very helpful!

Mary said...

My 1 1/2 year old son just got diagnosed with fructose malabsorption and currently is running a fever....do you know of any pain relievers to give children....they all seem to have sorbitol or high fructose corn syrup. Also, is there a multivitamin that is okay to take?
Any help finding information would be greatly appreciated
Thanks! Mary

Steph said...

Hi Mary

It might be a bit hard to answer your question as it really depends on what country you are in. I am in Canada and in Canada it is much easier to find items that use sucrose. While HFCS is used here as well as alternative sweeteners, it is not near as bad in the US.

I was just looking through my medicine cabinet and realized that the ingredients are only listed on the boxes of the medicines which I have thrown out so I can't give ingredient information. So while what I have used has worked for our kids it may not work well for others depending on the ingredients, but if my memory serves me correct anything that I bought was either sweetened with sucrose or glucose or maybe glucose syrup, but I would avoid the obvious no-no's and alternative sweeteners.
What I do know is that I had to use Infant Tempra (acetemetaphin) for my son when he was little. As for ibprophen I used generic (no-name) brand products for this. I believe it was Teddy's Choice that I found worked for us.
The same goes for acetametaphin and ibprophen when they got older and I started using junior/children's medication instead of infants. I found that the generic (no-name) brand items more often stayed away from sorbitol and such. The common one we used was Teddy's Choice.

For vitamins we pretty much have the same thing. I look for the gummy type vitamins as these seem to be okay ... of course this depends on the tolerance level and if sucrose is tolerated. You can figure that there is probably 4-5g (a tsp) of sugar in one chewable vitamin.

We have found the Flinstone brand to work well which I believe is sold in the US also. It is sweetened with glucose syrup and sucrose. Again, I use the Teddy's Choice brand which is also sweetened with sucrose and glucose syrup. While the Flinstone brand uses food colouring/dye and natural flavouring, the Teddy's Choice does not use artificual colouring and uses natural flavouring also which could be an issue if there is exreme sensitivities to any of these. I actually rotate them and the kids seem to do fine on them.

I have heard in the US there is a brand called Traders Joes which also uses glucose syrup and sucrose as a sweetener.

A pricey option would be using something called NanoVM you can read about it here :http://www.solacenutrition.com/products/nanovm/nanovm-1-3-years.html It is a powder that is completely sugar free.

Hope some of this helps. All the best with this new diagnosis and I hope your son feels better son. If worst comes to worst it becomes a decision of which is more important - getting the fever down or keeping the fructose out ... bearing in mind that small amount of sugar that would be in a dose. I hope you can find something and it doesn't come to that.

Ornitorrinca said...

Hello Friend! I was diagnosed with FructMal when I was 19, and it's been roughly two years.
Honestly the mindset is the trickiest part. Although I have advice on how you should cater to your daughter's diet, I feel you should take extra care to your daughter's spirit. It's a very depressing thing having such thing in life taken from you.
Looking at her situation as "very limited" is only going to make things worse. This diet isn't just a lesson on nutrition, it's a lesson on how to deal with life!
She must learn to look only look at what she can have, never what she can't. The second she focuses away on what she can't have, she'll get depressed.
Go to your family, your grand parents, your heritage, the land your family has lived off of. I have a lot of Finnish blood in me, and it turns out veggies don't usually grow so up north-- and most of their meals have little fructose. I was delighted to find an entire world of untried food, and plus it really brought be closer to my grandparents and my culture.
I honestly feel my FructMal is a blessing in my life. It's all about how you look at it :) (and who cares if it seems just a little crazy to be so happy- you gotta make it to the end, man!)

Steph said...

Ornitorrinca

I so agree with you. It is definitely a mind set ... one that we are struggling to deal with. I also agree that we have to remain positive and we work hard at it. It has been over 2 years since we original began dealing with FM in our home and we've had to make many adjustments and changes throughout that time to figure out what works and how to approach things. We've had our battles and our frustrations and we're still struggling with it, but we are getting the hang of it.

The mind is definitely the biggest battle and accepting FM and how it affects us is a big challenge and one that I am still struggling to some to terms with myself and then to also help my children to deal with the diagnosis. But in the last year we have slowly begun to understand our bodies a bit better and our limitations and since there are 4 of us with the diagnosis we can work together. We may not like the diet but we definitely have seen the signs of what happens when we go off the diet and so we have to work together to stick to it.

If only I could truly accept the FM and not always try to be "normal". While our FM is mild compared to many, it's still bad enough that we have to work to stay on track ... a difficult battle living in a society that has never heard of FM and often things you're making things up when you talk about it. While I have learned to take a deep breath and ignore people that don't understand I still get frustrated because it's so common and if more people would listen they might realize that they too could adjust their diet to reduce the fructose in it and be healthier. But for now I just have to focus on my own health.

It's great that you find it a blessing ... I pray that I may come to that point!!

Anonymous said...

My name is Maureen of Phoenix, AZ, USA. I have had stomach problems for years and was diagnosed with IBS but I continued to have a lot of pain, gas and diarreah. The wonderful doctors at the Mayo Clinic just tested me for FM which I had never heard of. I tested positive 5 weeks ago.
Amazingly, I felt great after starting on my new fructose restricted diet.

It has also been a struggle though. Trying to figure out what I can eat is challenging, but I also agree that coming to terms with this diagnosis is one of the hardest part. I keep finding myself looking at what I am loosing. I am particularly concerned mostly about how my FM will affect my relationships since it is now difficult to go to a restaurant with friends or go to dinner at someone's house. Carrying a bagged lunch is not always an option in certain situations.

It has also been frustrating that there are different opinions on which foods are safe. However, from reading these posts it looks like FM is very different for each individual. I appreciate all of the information on this website and posts and it is good to know that I am not alone.

Steph said...

Maureen

I am sure right now you are just very thankful that you finally have a diagnosis that you can work with. There will be ups and downs and frustrations while being on the FM diet, but knowing you have FM is a start to dealing with your IBS.

You are right, it is very frustrating that there is no set List of Does and Don't when it comes to FM. We all deal with this frustration and it adds to our confusion when we're trying to figure out what we can and cannot eat. FM is not something you can adjust to over night, it takes a year or two to better understand your body and what you can and cannot eat. Many with FM will also find that as they get their diet figured out they will react to things that do not fall in the FM category, but by reducing the level of irritation to fructose they were also able to figure out what other foods they are intolerant too.

The joy of eating out is taken away when you have FM, especially during the first year. Over time you will find things over the french fries that you can eat. You may also find that once your body heals you will have a great tolerance level ... and I'll admit it ... sometimes it's just worth it to enjoy the food, endure the symptoms and go completely fructose-free for a few days afterwards. It's all a balancing act and with time you'll figure out how to balance, but those first months are the most crucial on sticking to the safe foods.

All the best

Mary said...

Hi Steph-

Thank you very much for taking the time to publish your blog! I did find FEVER ALL, a suppository acetaminaphin for my son, but he is already too old for that and I have had to take your approach with medicine....that sometimes we may have to put up with the FM side effects if he needs it.
I really appreciate knowing that I am not alone in feeling frustrated and depressed with his diagnosis. We didn't know what was causing Bobby's stomach discomfort for so long, that I thought once we knew what we were dealing with that life would be rosy again. Dealing with this diagnosis has felt like a prison sentance! It breaks my heart everytime Bobby gets so excited to eat 1/2 a banana and cries and begs for more when it is gone. I have hated food these past months and feel betrayed by what I thought was healthy foods to feed my family, but have found they are all wrong for Bobby. However, I think I am finally ready to leave the "french-fry" stage and get investigating more healthy options to feed my family again. Re-reading your blog and knowing from you and others that this will be a process (maybe even a couple of years!) has given me the comfort and strength to know that I am not missing something obvious and to get working on expanding our food list.
Thank you!
Mary

Steph said...

Hi Mary

I just responded to your questions on the FM Support group and remembered that you posted here also :)

My blog is outdated and I would like to update it and continually say I will to provide newer and clearer FM information. I'm glad that you have joined the support group as there you will gather different peoples experiences as well as more up-to-date-information ...
eg ...

rice cakes are not good as they are made with brown rice which has now been found to have fructans.

brown sugar isn't good as it has molasses and while in our house we can handle this the other reason brown sugar is not good is because in the US it's usually made with beet sugar and not pure cane sugar.

pure cane sugar is really the only way to go, alternative sugars all seem to have adverse effects on FM, the only alternative sugar that seems to have some sucess is stevia which has unclear data on it at this time.

rye is no longer considered good ... also for the fructan reason

So those are just a few things that new research has indicated ... and as you'll find out it keeps changing just to confuse us

I hope that with time you will feel more comfortable moving past the french fries stage.

Remember that you become a meat and potato eater on the FM diet. White potatoes are good and there are a lot of different ways you can make potatoes. Add some fresh meat seasoned simply with salt and pepper and maybe some other spices that you later find out are tolerated and a small amount of safe vegetable (that will come with time) and you have a meal.

If you can get Bobby to like plain white rice you're also got a lot to work with. I hate plain rice, blah and dry, but my girls love it and rather have rice without sauce. Same goes for if he will eat plain white rice pasta/spagetti ... or make a simple soup broth and add the noodles.

Really, you will find that there are still lots of options, but it take a long time ... like you said years (1/2 year to a year to start feeling like you're not eating the same thing all the time). It all depends on sensitivity levels and child preferences. The longer you can keep it plain and simple the better as that gives him more time to heal. Rely on vitamins and such to get the nutrition that is missing.

I truly do hope to get this blog more updated with time, but for now there will be lots of information on the FM Support group to keep you going (and keep you confused ... really I'm still confused and frustrated at the differences from one person to the next and the different data all the time)

Julie said...

Hi! My name is Julie and I happily stumbled upon your blog!! I am 27 years old and have missed out on the last 4 years of my life, stuck in the bathroom with diarrhea EVERY day. I finally found out I have fructose intolerance about a month ago and am thrilled. I would do ANYTHING to feel better and get my life back.

I'm wondering if anyone has any snack ideas for me?? (preferably that don't need to be refrigerated). Rice cakes are not good (brown rice), and corn chips aren't working out too well. All of the gluten-free bread and bagels have brown rice??

Also, what vegetables are the safest, and for fruit, how about grapefruits or oranges? Or should fruit be avoided all together? I'm on a really strict diet right now, anything seems to set my stomach off.

Any advice would be greatly appreciated!!

Julie

Julie said...

OH and THANK you for the Sweet Tarts idea!! I had some yesterday and had no problems. I LOVE candy and fruit and everything sweet, and never crave salty things, so this has been extremely hard for me. I feel like my life has been turned upside down. Luckily aspartame is okay for me, so I have been sprinkling Equal sweetener on things. However, you literally made my day with the Sweet Tarts :D

I'm wondering your thoughts on things like lunch meat, Peanut Butter (okay as long as no molasses? the natural kind that separates in the jar seems gross), bratwursts, bacon, hamburgers, etc. Are these things fine as long as there are no additives like HFCS, honey, etc. And of course no bread or ketchup.

Julie from Colorado

Steph said...

Hi Julie

I'm glad that you have found the answer to what has been ailing you and hope that with time you will be able to find a good balance on the low-fructose diet to still enjoy food and life.

I will start off by strongly suggesting that you join the fructose support group listed on the links list on the right. There is a wealth of information and support there and it will especially be helpful for you to be able to connect with people in the US or even better yet in your State. It is often hard for me to help those in the US since Canada and the US are very different when it comes to HFCS (for starters it's not even called HFCS in Canada it's called glucose and/or fructose on the ingreidents list). We could be talking about the same product and yet they would use different ingredients.

If you have just started then the first thing to do is to go on a cleanse diet. Give your gut a rest and clean out all the "toxins" in it. This means no fructose (or as close as possible to no fructose). Stick to things like white rice, non-processed meats seasoned only with salt and pepper, eggs, white potatoes. Besides the potatoes stay away from the fruits and veggies for 4-7 days. This gives your body time to heal and then you can slowly start reintroducing foods - one new food every 4-7 days. Yes it's a long process.

Our intitial diet consisted of a lot of eggs, hashbrowns, oatmeal (this is if you are confident that you do not have any gluten issues, otherwise make sure they are GF oats), regular potato chips (we are so sick of those now), and meat and potatoes for supper. We did start off using dairy products but many with FM also have issues with lactose and I found that I became too dependent on diary to fill in the missing pieces and after a bit realized that I am somewhat lactose intolerant ... I have a decent tolerance level of lactose but have to be careful not to have too much milk products. The only thing I really drink is water or decaf tea.

The first weeks are the hardest because the diet is so bland and tiring, but it does get better.

I would suggest starting more on the veggie side as you could probably build up the diet a bit quicker that way. Some of the safer veggies are lettuce, spinach, zucchini (which is so versatile and can be put into many different foods) and peeled cucumber. On the fruit side the common ones to start with are bananas and strawberries, altho I would suggest rhubarb and pumpkin which are suppose to be safe and have very low overall fructose. The problem with those two is that you can't just pick them up and eat them, they need to go in recipes. You need to start small also. E.g. only 1/4 banana and over time see if you can get up to 1/2 banana ... this is somewhat the limit for many people. Also the riper the banana the less fructose. Grapefruit does have a low overall fructose content and is suppose to be good as a possible try, altho I have not heard of many that eat it often. Personally I get twitchy spasms in my eye from it (and have since learned of others that also get this) ... altho not sure if this is fructose related or something else. Oranges is also another common one that people will try sooner in the diet ... for us we have 1/4 cup of watered down orange juice (bearing in mind that one cup of orange juice has 3-4 oranges in it).

Steph said...

.... continued ....


As for lunch meats - check ingredients, the less ingredients the better. This is where the support group may help as there has been some discussion about this and various brands have been mentioned.

I would suggest not having peanut butter during your cleanse diet and later introducting a brand that has safe ingredients. I agree, I don't really like the pure kinds and it's interesting that the pure peanut butter has the same amount of sugar in it as the processed kind (even though processed kinds have sugar added). Not sure who's data isn't truthful (guessing the processed kind ... again, it may be different in the US). Peanuts (and many nuts) seem to be an issue with those with FM. This may have something to do with overall sensitive and damaged intestines as nuts really do not have much if any fructose. So I suggest proceeding with caution when it comes to peanut butter. You may want to instead try Sunbutter, many have had success with this. We do use a bit of peanut butter in our house and we stick to the Kraft brand, but this may not work for everyone as it has corn dextrin and soybean oil, so if you have a high sensitivity to corn and/or soy (which has fructose) it's not an option. Trial and error.

There are bacons out there that are safe, just look carefully. Bear in mind that really the only safe sweetener for FM is pure cane sugar (which I understand is harder to find in the US as beet sugar is commonly used). Glucose and dextrose are usually derived from corn, so if you have a corn sensitivity you have to be careful of these (depending on the level of sensitivity ... you did say the sweetarts went over okay so you might be okay with limited amounts). Our family does okay with corn and so glucose/dextrose work as our friend. So as far a bacon goes look for something sweetened with sugar and not HFCS, maple syrup is also suppose to be okay for FM ... we haven't tried it since it's rather expensive.

I would suggest staying away form sausages at first and then it may be hard to find a suitable one as they almost all contain onion and garlic which are fructans and you'll have to see how you can do on thse fructans first.

In the end it all comes down to trial and error. Start with a good thorough cleanse and slowly work yourself back onto foods. It takes time ... and it gets frustrating and we all cheat from time to time (and usually regret it afterwards). The first months are the hardest but also the most crucial as you'll really begin to understand your body better (hopefully .... sometimes we end up more confused). Join the support group and they can offer help and advice and experience as you go along.

All the best

Julie said...

Thanks Steph!
I really appreciate all of your help! This is definitely a long process but I am so excited to finally be feeling better.

Devon said...

Thank you for the info! I'm headed out to buy some SweetTarts for my 3yo son!

Anonymous said...

Its a good thing you caught this early. I am 17, and had been unable to keep food down for almost 2 years before we figured out my fructose intolerance.

Cande said...

I am so glad I came across this. I have had problems for over a year now and the doctors couldn't figure out what was going on with me. They ran a bunch of expensive tests on me and I wasn't getting anywhere. Finally after one of my tests and they were ready to treat me for something else. I told my doctor I was having symptoms that diagnosis wasn't explaining.
She suggested I should maybe have a breath test to see if I was having fructose malabsorption. She just kind of left me with that and I have been trying to do some research on my own. I had no idea how much or what to avoid. My test isn't for another week but I feel SO much better after following all of the advice.
You had the only advice I could find on what to really eat. I felt like I was going to have to just go with all of the random advice on everything I found. I am just very grateful I found your blog. It's just crazy on all of the symptoms I was telling the doctors, that they didn't bring this up sooner. Now all of the different symptoms fall into place once I found out about fructose malabsorption. I had every symptom (bloating-in the upper abdomen, fatigue, sore eyes, fuzzy head, feeling of extreme fullness, and more-and after my doctor had told me what might have been the problem, I had to pretty much talk her into another explanation, because it just didn't make sense and then she brought up that they should check for it.
Anyway, thank you for sharing. Your knowledge is going to help me until I can get the breath test and talk with a nutritionist for a better understanding.

Steph said...

Hello Cande

I hope that you are able to find a clear answer for what is ailing you. Your symptoms certainly sound like a malabsorption issue, it will just come down to figuring out what malabsorption it is. Please read through the comments I have posted as they will clarify some of the errors in the original diet that I posted. Since that time I have learned more and researchers have learned more. A few changes you will note is that rye is no longer acceptable and brown rice should be avoided ... so this means also rice cakes which at the time Rebecca was eating.

I will share with you something that I am working on, it is only in the beginning process and I don't always seem to have time to work on it, but hopefully with time I can put together some more information. I have started a new blog specifically on FM and what I have learned over the past few years. It has certainly been an ongoing struggle, with many changes being made over time. It has been frustrating, but yet rewarding to have a clearer head and be able to think much better with less fatigue. You can read my Life with Fructose Malabsorption blog at: http://www.lifewithfructosemalabsorption.blogspot.com/ ... hopefully that will give you some more guidance.

All the best

DeAnna W. said...

This blog has been a lifesaver for me! I was recently diagnosed with FM. Being a person who loves to cook and bake, the news was devastating at first. After doing some research, I'm finding there is more out there than I thought. Trader Joe's is a wonderful place to find uncured meats and tons of gluten free products for decent prices. While their website doesn't provide nutritional inforamtion, they do have 5 pages of gluten free items to give a person an idea of what to look for. Of course some of those items aren't good for me, but many are.

Have you heard of Turbinado sugar? I've looked it up and it is cane sugar that is not heavily processed. I've seen that and evaporated cane juice on some products. Any experience with either of those? I've tried some products with one or the other and have felt great so far.

Steph said...

Hi DeAnna

Since you love to cook I am sure you will survive just find on the low FM diet. That doesn't mean it will be all fine, but loving to cook means you'll go the extra mile to make a variety of foods suitable for you. I love to cook and bake - just hate the cleaning up part ;)- and having this love has helped me to work towards creating a variety of meals that are save and trying to find food that are pretty much the same as what we were eating before. I rather just be "normal" but we're figuring out how to manage as "abnormal".

Evaporated cane juice is a form of cane sugar and cane sugar is another word for sucrose. Sucrose being half glucose half fructose. So it should be tolerated by those with FM, unless you have a very low tolerance and do not eat any fructose. But since it is equal parts sugar and glucose it is find in moderation ... just remember that you can only have so much fructose at a time, regardless of how much glucose you have to offset it.

Turbinado sugar is not something I have come across but I have heard of it. My understanding of turbinado is that it's a raw form of sucrose and since it has not been processed as much it still has some molasses in it. For many FMers molasses is an issue. So if it's a raw form of sucrose the glucose/fructose levels should be okay there, but the molasses can be a problem. I would say it's a trial and error one. Stay away from it at first but maybe later you want to see how much you can handle of molasses. In our house we can handle small amounts of light brown sugar (also has molasses in it) and so I would guess that we can handle turbinado but since I've never run across it I can't say. Based on the information I read I'd say for those on a clean diet or with more severe FM it's a no-no. Hope that helps.

Also ... check out my new blog at
http://www.lifewithfructosemalabsorption.blogspot.com/. I'm trying to work my way through various common FM questions as well as provide some recipes that work for us.

austinrealestateguy said...

Loved the post, but do you have any idea how hard it is to read dark text on a dark blue background?

Steph said...

austinrealestateguy

Sorry, I thought I had fixed the colours, but I guess I didn't look close enough to make sure it has saved as I requested it. Hopefully it's all good now.

Katie said...

A helpful thing thing that I have found with this tricky diet is if I do ingest something that I wasn't suppose to, Smarties are a great fix. They are almost completely Dextrose, which helps process the fructose. They don't 'fix' the intolerance, but they do help tone down symptoms.

Katie UK said...

OMG I love you all, I am in the UK and I have been suffering for about 3 years now have had an abdominal scan, endoscopy and biopsy as my food 'intolerances' have been preventing me from absorbing the levothyroxine I need as I was born with an underactive thyroid gland. But the gastroenterologist told me there was nothing wrong with me, and basically insinuated in was all in my head. Anyway on my own I had worked out a lot of foods which affected me as cutting them out has been the only way to increase my thyroxine absorption. But the foods seemed so random until now. I had also established that I had a lactose intolerance, but we are lucky in the UK that we can buy lactose free milk and other dairy products and I am OK with goats dairy. I was a vegetarian for 20 years, but obviously that went out of the window. Anyway, I will embark on my 7 day detox tomorrow and begin to reintroduce foods as indicated. My main upset is that I cannot eat chocolate, even the non milk/soya versions, I can only assume as it is made with beet sugar (this is common in the UK) and I can no longer tolerate rose wine - though perhaps I can try white as I believe some types of grape can be tolerated. I apologise for going on it is just this is such a break through for me as I am sure you can all appreciate.

Stacie said...

My daughter was diagnosed today with FM. After 18 months of agrivating tests and doctors, we now have an answer, one we suspected. In addition to fructose, she seems to struggle with carbs in general. She is sick sick sick right now from her hydrogen breath test and want to help her feel better quickly. We wont talk to the dietician until they decide to call, so after looking at your list I was wondering what you think might help undo the effects of the glass full of fructose she drank this morning. Normally we have her eat protein only and sleep it off, but she is exhibiting far more symptoms then she does from just eating bad foods. Also, her first symptom is always irritability, then body aches/headaches, inability to focus/concentrate, then GI issues. Is this what most others see? Thanks so much for all your help. We are feeling so overwhelmed right now. Happy that we finally have a diagnosis and no more tests, frustrated with the lack of information. Thanks again!

Steph said...

Katie

Yes Smarties. They are called Smarties in the US and Sweetarts in Canada. Some people find that this can help a bit with fructose foods, but it is not helpful for fructans. We eats Sweetarts from time to time but did not find it obviously helpful before straying from the diet, but this was usually because wheat would be involved if we were eating something "special".

Steph said...

Katie in UK

I hope that you have found the answer to what has been ailing you. FM will cause your body to malabsorb other important vitamins and minerals and probably effects other aspects as well (such as seretonin) that we are still learning about. I hope that a low fructose diet is helping you to feel better and to absorb the levothyroxine again.

Yes, chocolate is a big lose for me also. I think it is probably sometimes harder then wheat. I have managed to get used to not having wheat but there is nothing that comes close to replacing chocolate. It is actually the fructans in chocolate that is the problem. There is some debate on this (as with many foods and their fructose levels) but it seems that chocolate is high in fructans and since fructans are an issue for us that makes sense. Chocolate is definitely my most sensitive food and I sometime wonder if it's more then just fructans. Many people are intolerate to chocolate or get headaches and ill effects from it.

I hope that discovering FM has helped you. It's not nice to have but it's better to know then to be left wondering all the time.

Steph said...

Stacie

I am sorry that I did not reply sooner, obviously my answer is too late. Unfortunately I would not have been able to offer any help as there is no medicine or way to reverse a fructose overdose except to avoid sugar for a few days and wait out the ill effects. This is what makes FM so difficult to deal with as you have to have a good control of it to keep your symptoms down. Once you have control you have to determine whether you feel like dealing with the ill effects of eating specific foods or whether you rather just stay clean and stick to the diet.

The symptoms your daughter has seem quite normal. Everyone is different and reacts different but those are all symptoms of FM. Some people will have GI issues sooner and others will have other body issues quickly, such as headaches and brain fog ... in our house we deal with both of these pretty quickly and we have two who get the irritability, sometimes not long after, but often that comes the next day or so.

I hope that you have begun to make some progress towards having your daugther feel better. Please check out my other blog also:
http://www.lifewithfructosemalabsorption.blogspot.ca/

LauraRomans said...

Great list! Watch for medicine with high fructose corn syrope.

Anonymous said...

Thanks for the SweetTarts idea. I have IBD in addition to IBS. Fructose bothers me the most. Here are the foods I find safe: very ripe bananas, homemade chicken and white rice soup, ripe bananas with sunflower seed butter, cashews with sunflower seed butter, spinach with curry sauce, mild curry chicken with white rice, white toast with sunflower seed butter, white toast with butter, white rice with a bit of butter, strawberries, some citrus, summer squash, white potatoes, Masala veggie burger with hard cheese and white bread, mint tea, ginger tea, Chai (you can get Roobois Chai),...

I don't eat chips due to all the artificial junk they put in them. Be careful with Lay's. They list corn sugar as one of their ingredients. It's really HFCS. I also just drink water or some light herbal teas. Many drinks contain hidden sugars. Avoid Vitamin Water. It contains fructose crystaline, which is even worse than HFCS. I find that when I'm at my worse, milk bothers me too. So I try to limit milk to just a bit in my tea. I generally stick to cane sugar when I want something sweet. I might add it to my tea. But I do find that I do better without milk. And I chew on crystallized (cane sugar) ginger candy after eating to reduce gas and bloating. Bananas and rice are great for diarrhea. They are part of the BRATTY diet: bananas, rice, applesauce, tea, toast, and yogurt. Of course, we can't have applesauce, given that it is high in sorbitol as well as having a high fructose to glucose ratio.

Anonymous said...

Sorry. I forgot to mention that...

My body can't handle maple syrup either even though it's supposed to be okay.

I forgot to list rice cakes, eggs, mashed potatoes with a bit of butter, and pumpkin pie. I also eat these. I will make my own pumpkin pie. I used to eat processed foods all the time. Now I try to make everything from scratch.

Diarrhea can cause severe dehydration. When I'm dehydrated, I drink Gatorade. It's very sugary, but it got me out of bed when I was bed ridden.

Someone mentioned drinking cold white grape juice or hot chocolate. Juice is like poison to my body. Chocolate also causes diarrhea. It's a laxative. Same with juice.

As for pain relievers, I can take only Tylenol (or a Tylenol generic).

Anonymous said...

My symptoms are probably on the severe end given that I have IBD in addition to IBS: gas, bloating, abdominal pain, diarrhea, urgency, ulcers (blood lose, mucus, lose of skin, blood clots), throwing up, fever, iron- and oxygen-deficiency anemia (due to the blood lose),...

Anonymous said...

Steph- Thanks for the info on your blog. I'm newly diagnosed with FM; what have you been told about whether continuing to eat some foods that contain fructose (at least, those foods that seem to be well tolerated) can cause any harm to the body? In other words, is this more like a gluten allergy, where continued intake can harm the stomach lining, or is it more like lactose intolerance, where it's just a matter of putting up with some discomfort now and then?

Anonymous said...

Steph, my daughter has this fructose malabsorption.... not all fruits are bad for them... only fruits with a higher fructose level then glucose. Berries and citrus fruits are fine, but no melons or pineapple, NO Apples/ pears (most juice uses these as fillers... so stear clear of juice).
Anonymous mentions the BRAT (banabas, rice, applesauce, and toast... applesauce is horrible for FM, and toast is bad for FM) diet that they put you on when you get sick... my daughter was on it for three weeks while we tried to figure out what was wrong and she just got worse and worse.
The idea of using sweet tarts to even out the sugars is an interesting concept.. I will have to try that when she goes to birthday parties.

Darcey said...

My son has been diagnosed with FM. He was been diagnosed with ibs 6 years ago, but knew something else was wrong. Now we are having a hard time with finding food he can eat or prepare quickly. He is 19 and feels very restricted and depressed with this diet. So is regular sugar good for him? Still trying to figure it all out and want to find things for him to eat

Anonymous said...

Hi Steph,

You're blog is very helpful! My daughter is almost 19 months old and seems to be intolerant to fructose, (we follow FODMAP diet) whey/casein, oats, brown rice, quinoa, buckwheat, corn and wheat. I'm desperately searching for someone else with these restrictions to vent and to brainstorm recipe ideas. Any thoughts you have are very much appreciated.

Thanks, J

mary said...

Thank you for the information. I had my gall bladder out when I was 15, and ever since then I've had heartburn and stomach distress. I've been on medicines for years that help me deal with them, but now that I'm in my 50's even the medicines aren't helping. About two weeks ago I posted on FB that I was tired of feeling sick. I thought it might be sugar, but I noted that I'd had cherries that morning and was sicker than a dog, but that I could have milk on my cereal, not be sick, and they both have sugar. One of my son's friends, who is a chemist, noted that pointed to the fact that I may have a frutose intolerance. Thank goodness for our kids and they people they bring into our lives! No doctor had even thought of this...sigh. I have been following a reduced frutose lifestyle, and the change has been amazing. And finding information like you've provided helps out more than I can say. I apprecite it more than I can say. The main problem for me is that I bake alot! Every week I bake cookies for residents at a local Ronald McDonald House and so tasting my creations is now limited, but I do feel much better. I now are going to research how to cook with glucose: I've been told it can be done, so I'm looking forward to seeing what I can come up. I have A LOT to learn, and will make mistakes along the way, but with wonderful folks like you who share their learnings I will succeed. Thank you so much!

Anonymous said...

Wow, great info here. Just what is a Sweet Tart?
I have been diagnosed with FM (8 years now) and still struggle along. So much more info out their now and so many changes in foods that were once considered OK but now could be a problem.
Good luck to you. Susan:)

Anonymous said...

Question? Have any of you diagnosed with fructose malabsorption also experienced respiratory related symptoms like mucus hypersecretion of the airways, chronic bronchitis, asthma, and/ or chronic ear infections?

Kathleen said...

my son has been sick since the 2nd week of Feb 2012. I have gone to 18 different specialists and have 18 diagnosisis, from SIBO to he is making this up in his mind, my son had mesenteric adentitis a painful swelling of the messenteric lymph nodes for 9 months until I found online that he had repeatly had high blood tests for high eosinophils and the condition eosinophil esophagitus, he is now taking pulmacort flexinhaler and the lymph nodes are down, He had the fructose test 3 weeks ago and it was super positive the tech said anything 20 and higher was positive Matthew (11 years old ) was tested and 100 was the highest he got, wow he has been super sick since that day and we are trying with his diet, He is so good and so sick, Oh Lord he is a beautiful blonde with blue eyes and large circles around his eyes and the palest awful color. Since the test he is burping and refluxing and flaring up with all his symptoms from the test. I am confused been reading online and read that for the Fructose Intolerant , can they have tomatoes b/c the Dr said to me they have the no fructose ketchup so have I been bad giving him homemade tomato sauce and now tonight read garlic was bad it was in the sauce I made, also the dr said EQUAL was okay and read again tonight on place ok the other no, have you heard of people having both these conditions plus fructose, the mesenteric addenitis and the eosinophils esophatitus and the fructose intolerance, trying to get this kid healthy , he is taking zantac, prevacid and pulmicort flexinhaler,

Anonymous said...

Before going on a probiotic(PB8), I was throwing up twice a week! Now, I still have all other symptoms....but at least not throwing up! I drink carbonated soda to make me burp often, so as to get rid of my nausea and headaches! But even though I watch my fructose intake, I am still soooo tired all the time, on Cymbalta for depression. I am known by my family and friends for being nothing but tired!!! it has taken over my life!

Anonymous said...

Kathleen, tomatoes are not good for your son!!! THey will give him a massive headache...then work on his digestive system!!!

Brad said...

Have you tried charcoal tablets taken after a 'bad' food has been eaten?

Some good snacks I have are: sesame snaps, fructose friendly 'muesli' bars (Food for Health), lactose free vanilla yoghurt with rasberries and blueberries.

Aside from myself (Fructose issues) I have 4 girls with a range of dietary issues
1. Fructose, celiac.
2 & 3. (twins) Issues with soy, dairy, gluten, preservatives/colours etc.
4. Suspect fructose issues.

It is expensive to buy food that we can eat and time consuming to make meals. Common meals include:
- Homemade pancakes.
- Rice cakes.
- Rice/meat dishes.
- Potato gems/chips.
- Homemade meat patties (good way to disguise veg).
- Plain chicken breast
- Eggs

Monash University (australia) have brought out an iPhone app which has the latest findings on safe foods. So many web sites list foods incorrectly it is very confusing!

Steph said...

Thanks to all those who have left their comments or questions. I strongly encourage you to go to my Fructose Malabsorption blog and see if you can find any answers to your questions there. On that blog I have an elmination diet and diet ideas that are more in line with FM as we learned different things over the years to help us better understand what we can and cannot eat.

I apologize that I have not kept up with the comments and questions.

A few quick thougts:
Sweettarts are knows as Smarties in the US
Sucrose or regular sugar can be okay but it really depends on a persons tolerance level as it is 1/2 fructose. Someone with severe FM will not tolerate sugar very well
Alternative sugars such as sorbitol, equal, splenda, etc are not okay, they are made of sugar alcohols which the average "normal" persons digestive system has trouble with, let alone someone with sensitive or a damaged digestive system.
Probiotics are a tough call when it comes to FM ... some do okay with them, many do not.
If carbonated soda means pop in general then this is a major concern and a very big NO-NO for those with FM. It is very hard to find pop that is made with cane sugar, almost all pop is made with HFCS. Even pops made with cane sugar are only be be drunk in very limited quantities as there is such a high amount of sugar in pop
For myself fructans (especially wheat) were the biggest reason for my constant tiredness.
Tomatoes themselves are not really on the no-no list, but they do become a problem when in sauces and ketchups and such as you are getting such a high concentration of tomato in a small amount. I would avoid tomatoes at first and then start with small amounts to see how you do


http://www.lifewithfructosemalabsorption.blogspot.ca/

Anonymous said...

My sister-in-law and I have both discovered in the past yearor so that we are effected by fructose malabsorption. After reading about sweet tarts here, I mentioned this to my sister-in-law who is a scientist. They use straight glucose in experiments, but it is very fast absorbing and would typically result ina fairly extreme sugar high and then sugar crash. So she did some research and discovered Trehalose, a slow digesting di-glucose made by Swanson Ultra. It is available online.

It is a miracle for both of us! I can eat a cup of fruit with breakfast with NO SYMPTOMS! Before we found this, I was in a state of nearly constant bloating and gassiness, so that I never knew what was causing it. I tested the Trehalose by drinking 1-2 tsps dissolved in water before EVERY meal, and within 24 hours felt better than I had in the previous 3 years!

Steph said...

Thank you for this interesting information about Trehalose. I think i will have to do some research and trials myself to see how this works.

Thank you

Anonymous said...

Thank you so much, I have been suffering with fm for almost a year now, and could never find any real results on what was happening, or anyone who has similar problems.... This list was extremely helpful for me, thank you

Biff said...

Have you ever tried lacto fermented or cultured vegetables like sauerkraut? I can not tolerate most vegetables and fruits, but if they are fermented i am perfectly fine. I can not juice, but if i make a kefir by fermenting i am fine.

http://www.choosingraw.com/how-to-make-homemade-vegan-lacto-fermented-veggies/