Wednesday, August 6, 2008

Fructose Malabsorption or Something Else?

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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Here goes another longwinded entry about Fructose Malabsorption or Dietary Fructose Intolerance (DFI). This is somewhat geared as information for anyone who is blog searching on the topic.

So it’s been a few weeks since we first found out that Rebecca tested positive for Fructose Malabsorption also known as Dietary Fructose Intolerance (DFI). During these weeks we’ve slowing been trying to figure this all out. First to figure out what Fructose Malabsorption means and the proper diet has been a challenge, then to figure out Rebecca adds an extra challenge as she’s not responding to the diet as expected.

Based on Rebecca’s symptoms we assumed she only had a mild form of Fructose Malabsorption and so our first couple weeks were spent reading on what she should or should not eat (and let me tell you there is a lot of debate and controversy on that one) and then taking out the worse foods. After almost two weeks of that we were not having any positive results so I spent some more time behind the computer. This reminded me very much of James and how much time was spent researched about his medical issues. When dealing with something I don’t want to just have a name of a disorder or medication I want to understand the disorder as best as is possible for the average person. I also don’t just want one persons opinion but to balance out various research and opinions.

After some research I came across a very helpful support group based out of Australia which has helped me to put things together a bit more. It seems that Australia is a little ahead of North America when it comes to Fructose Malabsorption and so this group was great at offering guidances. The most major difference between Australia and North America is the fact that Australia’s research acknowledges that fructans are a major factor in Fructose Malabsorption and therefore those with FM must avoid wheat products. This is different then having Celiac Disease where you cannot tolerate gluten. With FM you are able to have small amounts of wheat but must limit these amounts. So you would mostly eat wheat-free breads, cereals etc, but it’s okay to have wheat as an ingredient in a food if it’s not one of the main ingredients.

So after gathering more info we put Rebecca on the very restricted diet that I posted below. For the first week she had no vegetables either, just grains and diary products with tons to drink. My research showed that most people have almost immediate improvement on a fructose-friendly diet that still includes wheat and after taking wheat out they see even more improvement. So we figured we’d take almost everything out and get her system feeling better and then slowly add foods back in. But this did not work either. She still complained and said she felt no better. So we put veggies back in and we’ve been doing that for the past two weeks. She now says she feels somewhat better, but still has pain and still complains. Sometimes when she complains I can trace it back to something I think may have been the cause or we can see a valid reason, but there are many times where I have no clue since as far as I know we’ve been following the diet.

Which leads us to question if we’re tackling the right problem. She did test positive for fructose malabsorption, but is this really a major problem? or could she control this by some minor diet adjustments and instead we’re dealing with something else? Back to the doctor we went.

Her only symptom is stomach pains. Upon trying to get her on a proper diet we realize that she has pain almost all the time and just hasn’t complained or told us unless it’s very severe. She does not have the common diarrhea associated with FM, she used have bowel movements twice a day (prior to her diet changes) and if anything they could sometimes be “dry”. The next question is whether she actually knows how to interrupt pain. She mostly describes the pain as being hunger pains. She always feels hungry and given the option she would eat all day long too. She’s good during the time she eats and shortly after eating is complaining again that her stomach hurts and she feels hungry. I asked about this to the support group wondering if any others thought this was an accurate pain, some did say that this is how they feel, others gave suggestions on medication we might be able to try to help. On the other hand, for the longest time whenever she complained about a sore stomach we just shrugged her off saying “oh you’re probably hungry” since she always wanted to eat. So maybe what she calls hunger pains is not really but she thinks so since that’s what we’ve been telling her.

The doctor agrees with us that her symptoms do not seem classical Fructose Malabsorption. It becomes a question of how much we want to look into it or just see if her pains will go away (keeping her on a moderate FM diet as we do know she is positive for FM). For now it was decided to reintroduce wheat into her diet, since we hadn’t seen a significant change … and maybe we’ll get a better indication when reintroducing if she suddenly has more pain. After she’s had it back in her diet for three weeks we’ll run tests for Celiac Disease (her symptoms are not really classical for this either) as well as some other basic blood work. They’ll also do an ultrasound to pick up if there is anything abnormal. Once that’s done we’ll see how she’s feeling and what the results are and decide from there whether to further investigate or wait it out.

On our way home from the doctor I explained to Rebecca that she was allowed to temporarily eat wheat again. She was quiet for a few minutes and then I heard “Does that mean I can have bread for lunch?” and then she proceeded to place her “order” on what she wanted on her bread with a big huge excited smile on her face. As soon as we arrived home her first question was “can we have lunch now?” … it was only 11:30. The first thing she told daddy when he got home “I can eat wheat now”. Obviously very exciting for her … let’s see if her tummy things it’s as exciting as she does.

As a side note … eating wheat doesn’t loosen up her restrictions extremely as many breads have fructose added to them (good thing we mostly make our own bread with almost no sugar in it). Seven-grain, multi-grain, etc type of breads do not use as much sugar/fructose, but even the studies that do not fully support the wheat-free diet do advised to stay away from the higher-less-refined grains and stick to refined wheat. Eating other store bought wheat items, such as cookies, baking, etc is also still restricted as most of them have some form as sugar as the second ingredient… we’ll have to work on our baking skills to help in that area.. So the restrictions are loosened, but the reigns are still relatively tight.

I have posted some links on the side to Fructose Malabsorption sites that I have come across for anyone looking for information. This does not mean I support one or the other as you will quickly find that they have different ideas and information, making it all very confusing… it is only a means of helping to gather information for those who might need it. I strongly suggest to anyone who is working through this diet to join the Fructose Malabsorption Support Group. They have some good files on the site to help as well as some knowledgeable people who are very experienced and good at offering guidance.

In the meantime I’ve learned lots about Fructose Malabsorption or DFI but I’m not quite convince that this is what or all that is bothering our girl … time will tell.

26 comments:

Anonymous said...

Thanks for the information on FM and DFI, Steph. It was very interesting and informative. We tend to take it for granted when our body works the way it is supposed to and we forget that not everyone is that fortunate.

We sincerely hope that after a few weeks on her FM diet, Rebecca will start to feel lots better and that you will be able to "zero in" on the foods that cause her the most difficulty.

You remain in our thoughts and prayers.

Arend and Willa Dale

Kevin and Amy said...

Glad you have found that helpful group. Hopefully they can help you and Rebecca get to the bottom of all this!

Vanessa said...

Very helpful links and information, thank you. After ruling out lactose intolerance and Celiacs in our 2 year old son we finally think we've found the culprit is Fructose Malabsorption. It's a night and day difference in his gastrointestinal issues. Now we'll have to go to the doctor and tell HIM what is going on with our son. :) Don't forget, a mother's instinct may be over or underexaggerated but we know our kids.

Steph said...

Vanessa

So glad you found the links helpful. I am not a FM expert so I figure I will post the links to where I'm getting my information. I just know it's been such a struggle for me to figure out the proper information so I hope that these links help others to quicker come to information they need. One other thing I hope to someday outline is all the different sugars and there names. I found at the beginning I was often standing at the store going "I remember reading something about this type of sugar but I can't remember if it was good or bad" But I also realize that different countries use different words, although most is somewhat similar. In the end I've just learned to look for Glucose and Dextrose and skip the rest.

I see you joined the Support Group ... which is really the best place to get your info as it's a continual learning process there and everyones working to try put this puzzle together. I hope your son only has a mild version of FM. When I read some of the issues people are dealing with on the support group I don't know how they manage on such a restricted diet.

I found it a lot of information overload at first, not sure what to follow and what to ignore as everyone is saying something different and so the only way to go was to go extreme and work from there. I hope that you quickly get a grip of it all. I'm so glad to hear that the diet change made such a difference.

We were in the States last weekend so I got a chance to read some US labels and I can't believe how much more High Fructose Corn Syrup I read. Not to say that Canada doesn't use it's fair share (they call it Glucose and/or Fructose here) but the States is worse.

I hope all goes well and your sons GI issues completely settle down ... now that you are on the support group you can get answers to most questions, or at least some guidance ... you can also find my e-mail address on the sidebar.

All the best.

Liz and Cooper said...

Hi from Australia,

I came across your blog, and read it with great interest. . My 2 year old boy has just got results back from his breath hydrogen tests. They came back positive for fructose and sucrose. We will be seeing the Gastro doc and Dietitian next week. Boy what a roller coster ride it's been. I just wanted to let you know that we will be sharing a journey together. My thoughts are with you. I hope we can share in each other's progress and perhaps exchange ideas, links and food ideas.
I will check back reguarly for news.

Steph said...

Hi Liz and Cooper

So sorry to hear that you are also dealing with FM. I cannot even imagine how this is magnified by having Sucrose intolerance also added. I hope that you get some good help through the GI doctors and dieticians, although both of these are very rare and dieticians often do not know how to deal with it. Hopefully you get someone a bit familiar with these intolerances.

I did not notice any new members on the Support Group that fit your descriptions and so I strongly suggest joining the support group I mentioned. There are links of information there as well as a group of individuals working together to try help each other through the confusing and complexity of FM. I think the biggest struggle is the fact that FM is different for everyone, so the information out there various so much. But on the group we realize it's very different but are also able to offer guidance and ideas when someone is struggling or confused. Although I do not comment alot on the support group I do find I've learned a lot and it helps me keep in tune with everything. The group also helps when it comes to the different products in different countries ... one thing you'll learn ... Smarties in Canada and Australia is something totally different then the Smarties in the US.

Hopefully I'll find time to write more about FM soon, but I'm quite lost on the whole thing myself, so I'm not sure how much help I would really be, but it will be nice to talk more about those things I'm not sure on so that I can gather info from others who may have the same questions.

Please feel free to e-mail me (robnstephfamily at gmail dot com) anytime.

Liz and Cooper said...

Thanks for the information. My son has fructose and sucrose malabsorption. He is 2 years old. A few of us have set up a support group for parents and caregivers of children with any of the following malabsorption problems:
sucrose
fructose
lactose.
We are beginners at this and are working on the site. To give more information to parents. The address is
http://groups.google.com/group/fructose_sucrose_mal?hl=en

I hope things have improved for your daughter.

Anonymous said...

Hey!!
I have fructose malabsorption too. One thing I thought you might like to try is sourdough bread. I live off the stuff! The fructans are killed off in the process of making the bread so might be worth a try!!
Good luck!

Anonymous said...

Sorry!
I should of specified white sourdough bread is what I can eat. Not rye or anything with seeds. They're bad news!
I can only eat meat, eggs, chicken, the bread and maybe a few leaves of spinach. In saying that, I ate something I shouldn't a week ago and I'm still suffering. Its so confusing.....

Steph said...

I apologize for my delayed response (if you ever read it). I had no idea and had not heard that about sourdough bread. I asked on the support group if others have had positive experience with this and it seems to be the case.

I keep saying I'm going to try make my own, but I never get aroud to making the starter (takes about 7-10 days) ... that is tomorrow's project now (I wrote it down so I won't forget ... no excuses this time :) I'm sure she will like it and even if she's not fructan sensitive (she doesn't seem to be) it's any easy way to minimize her frutose/fructan intake.

The general concensus is that rye is a good alternative for those with FM and often 100% rye bread is recommended. Rebecca won't come near that stuff (not that I blame her). I do make our bread with some rye in it (usually 25%) as I hate the idea of eating completely enriched flour.

Thanks for that tip and I sure hope that you are able to slowly expand your diet and your stomach tolerates more foods. I continue to hear from various people dealing with allergies and eliminating foods that usually your body reacts much worse and is quite intolerant at first and then slowly you are able to reintroduce. It sure takes a lot of patience and something like FM is so difficult as there are no set guidelines and the tolerance varies so drastically from one person to the next.

All the best

Steph said...

Due to the restritive nature of the Support Group I mentioned in this post a new group has been set up. This new group is just in the makings but hopefully will take off to offer the same type of support with a bit more flexibility on diet conversation, realizing that everyone is extremely different when it comes to what they can tolerate.

This group can be found at http://health.groups.yahoo.com/group/fructose_malabsorption/.

Please stop by, join in and help this group to develop ... to help each other through the various questions and struggles that come with a uncommon health issue.

Also, as mentioned above there is a group set up for those suffering from multiple malabsorptions of fructose, sucrose and lactose.

Steph said...

Sorry ... that link didn't show up completely ... here it goes again:

http://health.groups.yahoo.com/
group/fructose_malabsorption/

conrad said...

Hi,

I just randomly came across this, but I have pretty much the same problems (i.e., I don't tend to get the runs, but my stomach gets queasy really easily, and takes a few days of careful eating to get back to normal), and have also been breath tested.

If it's any use to you, I find that the stomach pains often come on an empty stomach. This is why you feel like eating all the time -- not necessarily because you are actually hungry in the way that you might be if you didn't eat for a day, but because it seems to be the case that if you eat something the problem goes away for some time.

Rachel said...

I have just discovered this fructose malabsorption and based on symptoms my daughter has exhibited, actin in stomach discomfort basically every night for her two years of life, i think she may have this and not food chemical intolerance which i previously thought. Also though i believe she is dairy and soy intolerant because her older sister was. In the blog that i read about this first http://fructosemalabsorptioninchildren.blogspot.com her child was also intolerant to these things. I wondered if you had tried cutting out milk and soy protein. Just a thought. It is frustrating to be in the United States with these problems. It seems like Australia is miles ahead. That is where I found most of my information on possible intolerances. I am so grateful for the internet.

Steph said...

Rachel

Thanks for your comments. We did try removing milk and soy as well as a variety of other foods for a time period, but that did not make a difference. With time we have been able to come to a more comfortable level for her and are still working with the rest of the family on this. Our son is also milk and soy intolerant ... as well as rice and barley. It sure takes a lot of frustrating time and thought to try and figure out all the different food factors. I agree with you, the US (and Canada) is further behind and does not have the doctors to help in this area, but at the same time we can be very thankful for the time we live in with such technology that we can learn so much from our homes as well as be able to quickly connect with many others dealing with similar issues. I know I'd be lost without them as the doctors information was not near good enough to create a good diet.

Anonymous said...

Fructose will make you feel extremely hungry. There was a study done on fructose with rats and the rats that ate fructose ate a ton more than the rats that were not given fructose and the fructose eating rats ened up with cancer.

I have a problem with fructose and gluten. I am a Celiac and what you described about your daughter eating and then very soon after is extremely hungry again, that is exactly what happens to me when i eat gluten or fructose! I use to think that was the normal feeling of hunger but, it is not. It is a very extreme hunger feeling and it is caused from gluten or fructose. It is hard for me to pinpoint which one causes it for me, I think both. I use to feel that "hunger" constantly except for when I would eat but very quick after, so I would eat all the time.
I would be getting hypoglycemic and that too causes you to feel very hungry and both gluten and fructose can cause this. Her story sounds very familiar to me.

Ian said...

Hi from Australia. I have both celiac disease and FM (nuts are no good too). Even though restricting my diet helped heaps, I still had problems. My digestive dilemma was fixed when I started combining my foods correctly. No starch with protein and fruit separate to a meal. My doctor calls it the "Hay Diet" named after Dr Hay (back in 1913). The main site I use is American based http://www.greattastenopain.com
Hope this helps.
Cheers, Ian

Steph said...

Thanks Anonymous for your comments on feeling hungry. More people have mentioned that they get that hunger feeling so I have come to accept that this is part of FM but I have to be careful that we don't right away feed more food because of the hunger feeling ... this could lead to other problems :( I have to say that with the FM diet a bit more "under control" we don't seem to have this issue as much, so there definitely is a relationship between the two.

Steph said...

Ian

That is interesting and something I may have to look at a little further as there just seem to be times when I can't figure out why I'm reacting when I'm quite sure I've been doing good ... or it's something I haven't reacted to before.

It's so hard to try figure everything out. God made us with such complex bodies with so many various factors having to be considered all the time.

Carrie said...

My son Preston is 3 and suffers from similar symptoms. Since he is 3 he hasn't been diagnosed by doctors but my nephew has this and the siet has been a blessing. He also is Ige to milk, shrimp and tuna and has several intolerances such as corn. He lives on eggs, white rice only certain brands. He is so severe he can't have brown rice. Only in Rice Chex and an occasional rice cake. Preston and my nephew have severe constipation problems which cause them to have to be on Miralax twice a day. He only weighs 30 lbs but has to have a capful to 3/4 capful twice a day. This can cause severe cramping. The both of them had regular bm's 2-3 Times a day but ended up completely backed up?? No one but my family doctor has suggested in all the appointments we've been to with allergists, GI , and pediatricians but I give him 1 teaspoon generic zyrtec(no corn syrup)when he crys and 1ML Ranitidine for acid refulx and USUALLY he quits crying/screaming in pain in 8 - 9 minutes. It's a lifesaver. Whish I knew when he was born!!
Only whole meats from local grocer, romaine lettuce, Success brand rice or Bob's Mill rice flower, banana's, blueberries, blackberries, raspberries, lemon, white grape or grape juice Welch's 100% Olive oil and balsamic vinegar dressing with parsley or basil. Hope all is better soon

Steph said...

Carrie

I hear you about being backed up but still going 2-3 times a day. I am the same and I also take Miralax to keep things moving. I have recently been adding Magnesium supplements to my diet as this helps with carb breakdown and have found I have been able to reduce the amount of Miralax I need. I am slowly increasing the Magnesium (A high dose at first did not go over well, so I'm starting smaller and spacing the pills out over the day to build up my intake) and hope that it will continue to help with movement.

I buy the generic brand of Miralax so I'm not sure how much 3/4 capful is as I use teaspoons to measure. Would you be able to tell me approximately how many teaspoons 3/4 capful is.

I'm not sure about the zyrtec but would it not be useful to have your son on Ranitidine full-time if that seems to be helpful. Or is the 1 ml in addition to a normal daily dose? From how I understand ranitidine it is not always so helpful instantly has having a better effective if used consistently, and it usually takes approximately 2 weeks for the medication to truly take effect.

Have you had any success with potatoes? White (not red) potatoes are fine for FM and add a large variety of options as far as meals go. Rice itself can be constipating so you would not want the diet to be too overly ricey. Brown rice contains fructans so if he has FM then this would likely explain why he cannot handle it. YOu may want to consider such grains as millet (millet puffs are a great breakfast option) or quinoa and buckwheat can make some nice pancakes and such. They are different tasting, so it would depend on their taste preferences. My favourite flour is sorghum, we do not use rice flour as my son is intolerant to rice and for some reason I can handle white rice but not white rice flour.

Well I hope that you are able to continue to figure out what your son can and cannot handle. All the best.

Anonymous said...

My 7 yo son has FM and we find he cant tolerate Rye bread. He sees a dietition from Shepherdworks (specialise in this & have published books)in Melbourne & recommended no rye or sourdough but oat bread. Best thing we did was their elimination diet - must be for at least 2 months for the bowel to heal & reduce sentivitiy before you start to reintroduce sensitive foods on their list. He can now tolerate onion & garlic - main problem is apple (often used as sweetener). Also did you know if they get a tummy ache/reaction glucose tabs or jelly beans are best cure - glucose then outweighs fructose in bowel & stops reaction.

Steph said...

Thanks for the comment on the rye bread. Since this post is actually rather old a lot has changed in our diet over the years. At the time of publishing they were really pushing to use rye bread but then studies came out indicating that this also has fructans. It is so frustrating that the data is not always clear and really in the end we are left to try figure out each item on our own as everyones tolerance is so different.

We now eat mostly GF bread (using oats, sorghum flour, potato starch and tapioca starch). We use oats a fair amount also, for crepes/wraps and oatmeal.

We use Sweettarts also ... these are like glucose tablets but a fraction of the cost as the glucose tablets found in the pharmacy section. While I'm not confident that they have helped us a lot, I have not found that they have adverse effects. We use them on those days where we know we're going to be "misbehaving". But you have to be careful as for some people using glucose/sweettarts in combination with fructans can actually make things worse. The glucose/sweettarts do not help for fructans but some actually feel worse after. Again ... that whole trial and error process.

Andrea with Natural Alignment For Life said...

I recommend trying NAET or some other similar form of natural allergy elimination. If it's a fructose sensitivity, it can be eliminated altogether, often in one session. I know, it sounds too good to be true, but I have found it very effective and have eliminated my dairy, grain and sugar sensitivities. I still have fructose to go, and will do that tomorrow. It works.

Ranzi said...

Hi my daughter had the same exact issue and it took me so long until now she is thank god pain free. She is allergic to chicken eggs and oats has colitis and fructose malabsorption. The pain was due to her fructose malabsorpion and I had to eliminate so much til she is better and no complains. She cannot tolarate corn some of FM ppl cant either. No gluten no sugar just stevia and no dyes. She can have dairy in small amounts throughout the whole day. Please send me a msg if u still trying to figure it out. My daughter just turned 4. Ive been going through this since she was 18 months old. And yes fructose gives u tummy pain and doesnt have to give her loose stools. And yeah she can have only small amounts of some veggies and almost no fruits at all. Half a banana a day and some other fruits very small amounts. Other than that she will be in pain. Her symptoms is only tummy pain. I questioned everything I put her on all kind of diets u cant imagine I was losing my mind I just wanted the pain to stop and finally it did. I make her everything from scratch. Its all in the food.

Chelsea Ribbon said...

How many weeks of diarrhea did your child have to endure before getting tested for lactose intolerance, celiacs, and fructose malabsorption? I ask because im on day 12 with my toddler. Next week I need to provide stool samples if shes still having diarrhea to rule out a parasite.

Her father and I both have food sensitivites, dairy for him and grains for me, so she doesnt eat much of those food groups. She eats a lot of fruit. She loves it so much, but I think that might be the problem. When will the doctor test her? He brushed me off when I asked and said its too soon.