Wednesday, June 18, 2008

Fructose Malabsorption and/ or Dietary Fructose Intolerance

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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Some time ago I mentioned that Rebecca has reoccurring stomach pains. We did eventually see the pediatrician. Actually we never had an appointment, she just asked how Rebecca was doing and in our brief conversation she came up with the idea to have her tested for Fructose Intolerance. She mentioned that she had a patient that was recently diagnosed with this and although uncommon it could be a possibility and worth testing. I think she based this idea on the combinations of two comments I made. I said when we put Rebecca on a high fiber diet her stomach hurt much more. That doesn't really tell you much, but the other thing I told her was the time we noticed she got much worse was when we discovered she had been binging on candy (she had a large coffee tin full of candy when we came back home from the Ronald McDonald House which it's contents disappeared in a rather short period of time). Well we can be thankful our pediatrician was on the ball and knows us well enough to think outside the box for it saved us putting her through a round of tests and we found the answer. Rebecca is now considered Fructose Intolerant.

I will admit that if she hadn't suggested this test I probably would never have followed through on seeing the doctors. I sometimes get the feeling I must be making my kids sick for it seems everytime I turn around something is wrong with one or more of them and we're always at the doctors. It seems all we talk about in our house is medical conditions and then you start to wonder if you're just completely wacko or something, and maybe that's rubbing off on the rest of the family, or maybe I'm brainwashing my kids into thinking every little thing is worth complaining about or more serious then it really is. I ignored Rebecca because she didn't complain too drastically (she never does complain so I should have known better), she appears healthy, is growing well, active etc. So I figured she'd outgrow the problem if I just ignored it. I'm thankful an answer came quickly for otherwise she'd have suffered with stomach issues for a long time since she's not very good at complaining (she should have gotten a few lessons from Marietta and then I would have done something long ago just to keep her quiet :)

So the doctor told us Rebecca is Fructose Intolerant, but after doing some research I'd have to say that she's actually has Fructose Malabsorption (also called by some Dietary Fructose Intolerance). We have a new pediatrician and she said she had never dealt with anyone with Fructose Intolerance, and our normal pediatrician (who is on maternity leave) said she had one case. So this is something more rare again, although in reading it seems it's not really as rare as believed, that many of us suffer from it, we just don't realize it. Anyways, so our doctor classified it as Fructose Intolerance, likely because of lack of knowing the difference and also because this is how it would commonly be referred to to the average person. True Fructose Intolerance (known as HFI - Hereditary Fructose Intolerance) is actually a much more serious disorder where the body does not have the proper enzyme to break down fructose, thus it can cause liver and kidney problems, as well as be fatal. Fructose Malabsoprtion (FM) although not always pleasant it is not life-threatening and is easily manage by diet. FM is an inability for your small intestines to break down fructose. In HFI you must adhere to a very strict diet whereas with FM you can learn to adjust your diet according to what you can tolerate.

So once again we're doing the diet thing in our house. We've done the gestational diabetes diet, the low-protein diet, we're now doing the gluten-free diet, along with milk, soy and rice free (Matthew), so why not add low-Fructose too. We see a dietician next week, which I look forward to as the internet gives a ton of information but is almost making me more confused. At least I had a chance to research before I go so I can ask questions when I get there. It seem that we have to avoid foods that have a higher amount of fructose then glucose in them. For some reason glucose helps breakdown fructose so if the glucose level is higher it will assist the fructose in breaking down and therefore the intestines will not have so much trouble ... so now we have to learn what foods have higher fructose levels then glucose. And if you think that fructose is just in fruit ... think again. Although most common in fruit is is also found in your regular table sugar, honey, corn syrup (a bit one). There is also some mention of fructan which is chains of fructose molecules in foods, such as wheat, onions, asparagus. The bigger challenge is that fructose is not on food labels like protein is, or always in the ingredients list.

We do know that Rebecca's intolerance is not too extreme as she had gone this long without having severe side effects. So she will be able to tolerate basic intake of fructose, but will likely have to tone down on the sweets and fruits. We'll take some time to learn the diet and see how she feels once more careful and then we can start challenging her to see how much she can tolerate. With the sweet tooth Rebecca has this could be an interesting challenge, but hopefully she can feel the results of abiding by the restrictions and that will make it easier. Regardless the effect of not abiding by the diet is not too serious and hopefully enough to put her back in line when needed.

So that's my medical lesson for today!

10 comments:

HH said...

Ever considered going into the medical field, Steph? You'd have a head start with all your knowledge. Hopefully the dietician can work something out for Rebecca and it won't be too hard on her sweet tooth. Glad you've got definitive answers and you can now work out a plan. Take care and all the best with it.

T.B.H. said...

I haven't heard of fructose intolerance before, but I certainly know first-hand of sucralose intolerance. It's the new wonder sugar in diet foods developed in particular for diabetics. It's pure poison to me! As well as being lactose intolerant (lactose also being a sugar) I know exactly how Rebecca must feel.
Makes it a little harder for a diabetic like me to enjoy any sweetened product that won't affect my glucose levels.
And in the old days we used to simply say, Too much candy will make you sick." How true!

Kevin & Amy said...

Glad you figured out what the troubles were for Rebecca's stomach. We'll pray that her pain goes away with this new maintenance plan!

Momofgirlsw/curls said...

Two of my daughters are fructose intollerant as well. Just diagnosed a year ago. If you are not too severe there is a Australian woman who addresses fructose intolerance and gluten free living in several cookbooks. One of the titles is Irresistable for the Irritable. I think another is Gluten Free Cooking but am not sure. Also, a German company, frusano.com, sells fructose free jams, etc. Good luck. My daughters are fairly severe (and appear to be getting more so) so it limits a lot of our foods. But, life goes on and we don't eat as many sweets anymore!
Good luck!

Anonymous said...

Both my son and daughter were diagnosed with Hereditary Fructose Intollerance in 1976 at Princess Alexandra Childrens Hospital in Sydney, At the time were very unwell with severely distended livers. The test was confirmed by blood tests after injesting Fructose. My son had a severe reaction and lapsed into unconsciousness. This year they will be 40 and 38 years of age and are quite healthy, unfortunately neither have been able to have children although neither are infertile, it would be interesting to know if anyone else has the same problem.
Lyn T.

Steph said...

Hi Lyn

Considering how uncommon it is to hear about FM I can only begin to imagine how hard it is if someone has HFI, which is so much more severe then FM (as seen by your sons reaction to the tests). It must have been very trying to work out diets for them, especially during a time where there was not the wonderful internet to surf around on and gather information and support. Even now I don't think there is a huge amount of support groups for those with HFI.

I hope your son and daughter are able to manage their diets well and receive the support they need when it is needed. Your question about children is interesting. As I know nothing about HFI I wouldn't even know where to start in finding an answer to that.

All the best.

LH said...

I live in Washington State and my son has been diagnosed with fructose malabsorption. He also gets extreme constipation, we have to go in to get him cleaned out at the GI doctors.

I have alot of guilt because I can't seem to find a meal plan that we can stick to. I go shopping and all the breads and crackers are either no fiber or have sweetners he cannot have. What have you other mothers done? Do you have bread recipes and menu ideas that I can follow.

I would really love to find a mentor Mom who can guide me through all of this. Thanks

Steph said...

LH

Thanks for your comment. I most certainly feel for you and what you are going through, especially since most dieticians do not know how to properly treat FM.

I am afraid I may not be the greatest help as I have gotten off very easy in the area of FM. It would seem that while we have FM in our family it is not a major issue with any of us. Matthew is the only one that we still have on somewhat of a fructose friendly diet, but even that has become more relaxed recently. The rest of us just simply have to avoid the very obviously high fructose foods, and can even have small amounts of them occasionally.

While I would be happy to try offer some guidance from what we have learned I might also suggest joining the FM Support group. There is a link to this group on the side of my blog. I originally set this support group up when I was in the thick of the issues with my children (and myself). Although we are not dealing with the issues as much anymore I am still involved in the group and try to stay a bit up-to- date on FM news. The group is slowly growing and there are many on there who are struggling with the same issues as you. There are several meal plans/ideas on the group and various people have offered recipes and ideas on what has worked from the. There is also a bread recipe listed on there. If you have not already joined I would suggest checking it out and seeing if it would be useful to you.

Is your son taking any sort of fiber supplement or other type of medication to try help relieve his constipation? There are fiber supplements that do not have fructose in them which could help you to better balance such a difficult diet. You could compliment this with something like Polyethylene Glycol 3350 which I have found works well for myself and my daughter. It helps to retain water in the intestines so that the stools are not so dry and thus preventing constipation. My daughter is 7 and about 50lbs and was recommended to start on 2 tsps and then increase or decrease as needed.

Wishing you all the best as you struggle through these issues.

msn said...

I have had IBS for 20 yrs.I found out ayr ago I'm lactose intolerant.I drink alot of pepsi and was wondering if I'm also Frutose Mala to.I have open lip schizencephaly and water on the brain.I had a stroke at 7 months old.Kat

Steph said...

Kat

Giving how common FM actually is there is a pretty good possiblity that this would be irritating you if you are suffering from IBS. It is definitely worth going on a trial diet to see if it is beneficial.

Unfortunately you would have to give up your pepsi, this is definitely a HUGE FM no-no. Before I realized that I had FM I did put together that I could not handle pop and now I realize it's because of the extreme amount of HFCS in it. While some people can handle diet pop, when doing a trial diet I recommend staying away from aspartame as well as many/most people with FM also cannot handle aspartame ... or most alternative sweeteners for that matter.

If you are considering giving the FM diet a try I recommended going through some of the links I have on the side of the blog to get some information as well as joining the support group which has more information on it and can help guide you.

All the best