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
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.