Fructose malabsorption? Are you freaking kidding me with this?
August 28, 2013 10:28 AM Subscribe
My nearly seven year old daughter was just diagnosed with fructose malabsorption disorder after years of chronic constipation and abdominal pain. We're on a confusing elimination diet, her pain isn't getting better, school starts in a week, and I'm tearing my hair out. Help!
Lily, who turns 7 in October, has been chronically constipated ever since she started solids. A serious and frightening episode in March convinced both me and her care providers that this was more than normal functional constipation; during a case of the throwups, she had only fruit juice, Sprite, ginger ale, popsicles, and Pedialyte for four days, and ended up so constipated that she got an intestinal obstruction and an X-ray showed poop backed up to the bottom of her esophagus. Treating her constipation hasn't stopped her pain. However, when her digestion improved on high-dose antibiotics for a coincidental case of scarlet fever, her GI doc put two and two together and ordered the breath test for fructose intolerance. The results were absolutely 100% diagnostic -- she has this condition for sure.
We immediately implemented a low-fructose diet, or tried to; there is not very much information out there about what this constitutes, and what information there is is very contradictory. If I leave off everything that's on ALL the avoid lists, we're only cutting out apples, pears, dried fruits, fruit juice, honey, mangoes, and high fructose corn syrup. If I leave off everything that's on ANY of the avoid lists, we're left eating nothing but nuts, peanut butter, legumes, rice, potatoes, spinach, mushrooms, and meat/fish/poultry/cheese. Of the things on THAT list, the only food she likes enough to eat every day is peanut butter. We've made a choice to restrict most fruits, wheat, many vegetables, and all high-sugar things except for glucose right now, leaving corn, rye, sweet potatoes, legumes, etc.
To complicate things, school starts next week. Last year she ate the school hot lunch all year round, this year she wants to do the same. Here is the school lunch menu for September. . . I don't see how that's going to happen. But this child is an incredibly picky eater and has demonstrated dozens of times that she would much rather go hungry than eat something unappealing. And then, in yet another set of confounding variables, her symptoms disappeared entirely when she started school last year and started eating the hot lunch, until she ate a ton of candy last Valentine's day and disrupted her system.
Making things even MORE difficult is that for my health, I need to eat a high-vegetable low-carb diet. We're committed to not making my daughter feel like the odd one out, but I don't really know how to manage this. I've asked her to make me a list of her five least favorite vegetables, and I'm only eating those for now, but it's getting kind of repetitive.
So, here are my questions:
1. What is the best, most reliable source of low-fructose foods out there? I need to get as much diversity into her diet as possible. We have a USDA handout from our doctor, but the information in it is contradicted by many other reputable sources.
2. What on earth do I do about school lunch? "She'll eat when she gets hungry enough" is categorically not true for this child; she will gladly simply skip lunch every day. This doesn't seem like a good way to go into first grade.
3. What are some good, science-minded support groups? I have found a lot of groups, but they're frequently populated by smug orthorexics who don't seem to give a crap about actual, you know, nutrition and biochemistry.
4. Her stooling has improved dramatically -- we're off Miralax for the first time since she relapsed -- and her appetite has shot up, but her pain hasn't improved. Does this mean I should cut more things? It's only been five days, but I want her to get better. I have no idea how bad the pain even is; she says it's a 2 out of 10 and seems unaffected, but when she had scarlet fever, she also said the strep throat pain was "not too bad, mostly it just tickles" so I feel like her self-reported pain should be taken with a grain of salt. After years of a microappetite caused by pain and inflamed guts, she doesn't have any extra weight to lose; her BMI is less than 14 and you can count her ribs from fifty paces, so I really don't want to restrict her diet more than I have to.
5. Why on EARTH would her symptoms have gone away when she started school last year?
6. Any tips for how our family can cope with this? If we can get to a place where we're just cutting the "super bad foods" list, we'll be fine, but this heavily restricted diet is causing us an immense amount of stress. I particularly need ideas for how to deal with the school; even with a letter from Children's, I feel like an instruction to never give her fruit or vegetables, only french fries or Fritos, is going to be a hard sell.
Thanks in advance. I'm so happy to have an answer at last, but this is really a challenge for me.
Lily, who turns 7 in October, has been chronically constipated ever since she started solids. A serious and frightening episode in March convinced both me and her care providers that this was more than normal functional constipation; during a case of the throwups, she had only fruit juice, Sprite, ginger ale, popsicles, and Pedialyte for four days, and ended up so constipated that she got an intestinal obstruction and an X-ray showed poop backed up to the bottom of her esophagus. Treating her constipation hasn't stopped her pain. However, when her digestion improved on high-dose antibiotics for a coincidental case of scarlet fever, her GI doc put two and two together and ordered the breath test for fructose intolerance. The results were absolutely 100% diagnostic -- she has this condition for sure.
We immediately implemented a low-fructose diet, or tried to; there is not very much information out there about what this constitutes, and what information there is is very contradictory. If I leave off everything that's on ALL the avoid lists, we're only cutting out apples, pears, dried fruits, fruit juice, honey, mangoes, and high fructose corn syrup. If I leave off everything that's on ANY of the avoid lists, we're left eating nothing but nuts, peanut butter, legumes, rice, potatoes, spinach, mushrooms, and meat/fish/poultry/cheese. Of the things on THAT list, the only food she likes enough to eat every day is peanut butter. We've made a choice to restrict most fruits, wheat, many vegetables, and all high-sugar things except for glucose right now, leaving corn, rye, sweet potatoes, legumes, etc.
To complicate things, school starts next week. Last year she ate the school hot lunch all year round, this year she wants to do the same. Here is the school lunch menu for September. . . I don't see how that's going to happen. But this child is an incredibly picky eater and has demonstrated dozens of times that she would much rather go hungry than eat something unappealing. And then, in yet another set of confounding variables, her symptoms disappeared entirely when she started school last year and started eating the hot lunch, until she ate a ton of candy last Valentine's day and disrupted her system.
Making things even MORE difficult is that for my health, I need to eat a high-vegetable low-carb diet. We're committed to not making my daughter feel like the odd one out, but I don't really know how to manage this. I've asked her to make me a list of her five least favorite vegetables, and I'm only eating those for now, but it's getting kind of repetitive.
So, here are my questions:
1. What is the best, most reliable source of low-fructose foods out there? I need to get as much diversity into her diet as possible. We have a USDA handout from our doctor, but the information in it is contradicted by many other reputable sources.
2. What on earth do I do about school lunch? "She'll eat when she gets hungry enough" is categorically not true for this child; she will gladly simply skip lunch every day. This doesn't seem like a good way to go into first grade.
3. What are some good, science-minded support groups? I have found a lot of groups, but they're frequently populated by smug orthorexics who don't seem to give a crap about actual, you know, nutrition and biochemistry.
4. Her stooling has improved dramatically -- we're off Miralax for the first time since she relapsed -- and her appetite has shot up, but her pain hasn't improved. Does this mean I should cut more things? It's only been five days, but I want her to get better. I have no idea how bad the pain even is; she says it's a 2 out of 10 and seems unaffected, but when she had scarlet fever, she also said the strep throat pain was "not too bad, mostly it just tickles" so I feel like her self-reported pain should be taken with a grain of salt. After years of a microappetite caused by pain and inflamed guts, she doesn't have any extra weight to lose; her BMI is less than 14 and you can count her ribs from fifty paces, so I really don't want to restrict her diet more than I have to.
5. Why on EARTH would her symptoms have gone away when she started school last year?
6. Any tips for how our family can cope with this? If we can get to a place where we're just cutting the "super bad foods" list, we'll be fine, but this heavily restricted diet is causing us an immense amount of stress. I particularly need ideas for how to deal with the school; even with a letter from Children's, I feel like an instruction to never give her fruit or vegetables, only french fries or Fritos, is going to be a hard sell.
Thanks in advance. I'm so happy to have an answer at last, but this is really a challenge for me.
My husband has a host of food allergies (eggs, soy, nuts, certain fishes, shrimp) plus celiac and was a very, very picky eater growing up--I suspect this actually had something to do with natural attempts to avoid foods that caused him intestinal distress. He's seriously happy eating rice and meat every single day forever. As someone who has to cook within his very narrow diet, I can tell you that it gets easier the longer you've done it. You'll learn to manage this!
Some things that might be helpful: cooking up a giant pot of stew using stuff she can eat, if she likes that, with small servings of rice. Think meat and beans and potatoes and endless variations of that. These might be good to stock up on. You can pack these for lunch in a tiffin container. Also, homemade gluten free breads (is she eating eggs? It's easier to make GF bread with eggs but not necessary).
Honestly, I don't think she can swing the hot lunch. Them's the breaks, kid. And I also wouldn't worry about her getting much variety, especially in light of her pickiness. Focus on establishing a routine for you and for her and teaching her the ropes of her food limitations for the first few months, and wait and see if her symptoms improve. It's great that you've figured this out, because it will mean a much higher quality of life for her.
posted by PhoBWanKenobi at 10:47 AM on August 28, 2013 [1 favorite]
Some things that might be helpful: cooking up a giant pot of stew using stuff she can eat, if she likes that, with small servings of rice. Think meat and beans and potatoes and endless variations of that. These might be good to stock up on. You can pack these for lunch in a tiffin container. Also, homemade gluten free breads (is she eating eggs? It's easier to make GF bread with eggs but not necessary).
Honestly, I don't think she can swing the hot lunch. Them's the breaks, kid. And I also wouldn't worry about her getting much variety, especially in light of her pickiness. Focus on establishing a routine for you and for her and teaching her the ropes of her food limitations for the first few months, and wait and see if her symptoms improve. It's great that you've figured this out, because it will mean a much higher quality of life for her.
posted by PhoBWanKenobi at 10:47 AM on August 28, 2013 [1 favorite]
Other thoughts: baked potatoes! Loaded or not. Microwaved ears of corn! I'd really just focus on getting safe foods into her little belly. Don't worry too much about how bland her diet is or anything like that. She needs those calories and nutrients pretty desperately.
posted by PhoBWanKenobi at 10:55 AM on August 28, 2013 [1 favorite]
posted by PhoBWanKenobi at 10:55 AM on August 28, 2013 [1 favorite]
If I leave off everything that's on ANY of the avoid lists, we're left eating nothing but nuts, peanut butter, legumes, rice, potatoes, spinach, mushrooms, and meat/fish/poultry/cheese
Actually, due to food allergies this is my diet except I am a vegetarian and I am also allergic to dairy. So it's not fun, but it is possible, and it absolutely becomes easier over time. I don't have huge variety in my diet but it beats the alternative (which for me is anaphylaxis). I would find a good multi-vitamin that does not contain fructose and be sure she takes a double dose every day.
On the lunch menu, it looks like there is a range of options available each day. Do you know what she tended to order? Can you show her that menu and ask her what of the options she'd like to eat most? It seems like you could work backward from there to engineer some decent from-home lunch options for her. If you can come back with some of her favorite dishes, maybe we can help work out no-fructose alternatives.
This doesn't sound like fun, but it is definitely manageable. Good luck!
posted by kate blank at 11:02 AM on August 28, 2013 [1 favorite]
Actually, due to food allergies this is my diet except I am a vegetarian and I am also allergic to dairy. So it's not fun, but it is possible, and it absolutely becomes easier over time. I don't have huge variety in my diet but it beats the alternative (which for me is anaphylaxis). I would find a good multi-vitamin that does not contain fructose and be sure she takes a double dose every day.
On the lunch menu, it looks like there is a range of options available each day. Do you know what she tended to order? Can you show her that menu and ask her what of the options she'd like to eat most? It seems like you could work backward from there to engineer some decent from-home lunch options for her. If you can come back with some of her favorite dishes, maybe we can help work out no-fructose alternatives.
This doesn't sound like fun, but it is definitely manageable. Good luck!
posted by kate blank at 11:02 AM on August 28, 2013 [1 favorite]
I definitely would consult with a dietician. I had an eating disorder for years based on the fact that most things I ate caused me pain. I was able to come up with a ton of great ideas after I consulted with a dietician and had a good plan for what was safe to eat. I also think she's probably giving you the pain numbers she thinks they are- I know that years of pain made my tolerance all sorts of weird. I think that lunches from home are almost definitely going to be a better choice, the level of risk with allergies like that are way higher than they need to be.
posted by Nimmie Amee at 11:06 AM on August 28, 2013
posted by Nimmie Amee at 11:06 AM on August 28, 2013
I just want to say first off to RELAX. It sounds like you've had a whirlwind time with symptoms, diagnosis, etc. Now that you know the culprit, sit down with a registered dietitian and plan out which foods she can safely eat and that the whole family can eat and enjoy. Coming from a family of picky eaters and food intolerances, there are plenty of items on the green-light list that you mentioned that make up complete and tasty meals.
It's not a surprise the kid prefers to go hungry - food has been a source of stress, pain, doctors visits, parental-hair-pulling, freaking out, blame, anxiety, etc. Try to start normalizing and stabilizing her (and your family's) eating routines -- everyone eats the same meal at dinner (no special options), you don't have to finish it but you have to try everything on your plate; get her involved in the cooking and menu planning or the ritual of setting the table. Help her see food and eating in a positive way. In general, a physically healthy child will not voluntarily skip more than one meal (without snacking), unless there is a greater psychological force at play. If needed, have her see a therapist/counselor who can help her develop a more positive relationship with food.
posted by melissasaurus at 11:07 AM on August 28, 2013 [4 favorites]
It's not a surprise the kid prefers to go hungry - food has been a source of stress, pain, doctors visits, parental-hair-pulling, freaking out, blame, anxiety, etc. Try to start normalizing and stabilizing her (and your family's) eating routines -- everyone eats the same meal at dinner (no special options), you don't have to finish it but you have to try everything on your plate; get her involved in the cooking and menu planning or the ritual of setting the table. Help her see food and eating in a positive way. In general, a physically healthy child will not voluntarily skip more than one meal (without snacking), unless there is a greater psychological force at play. If needed, have her see a therapist/counselor who can help her develop a more positive relationship with food.
posted by melissasaurus at 11:07 AM on August 28, 2013 [4 favorites]
We had to cut to a gf diet for my daughter who has Celiac. It's doable and you can make things to appeal to multiple diets. For example, I can't eat corn, but I will quite happily make corn on the cob for the rest of my family along with other things, of which I get a greater proportion.
With planning, you can make separate meals. At one point, I was on an easy-to-digest diet, while everyone else was not. We got a few tools to make life easier - like a rice cooker. When I started making dinner for the rest of the family, I started up a batch of rice. One morning, I would hard boil a dozen eggs and I would schedule chicken dinners for which I would turn the carcass into broth overnight in a slow cooker.
Things that have made life way easier in general is to avoid processed foods. Just stop buying them. You know what goes in her mouth because it's whole ingredients.
As for lunches, it's hard to say. You might be able to work around her stubbornness by figuring out from the school if, instead of hot lunch, she could have a morning snack and an afternoon snack from home. Then you can give her the choice of eating a lunch from home or eating two snacks and no lunch, which admittedly is not a great choice from her point of view but at least you're getting nutrition in her more regularly.
Kids adapt. My son can't tolerate red 40. He has learned to self-regulate (he's 6).
posted by plinth at 11:09 AM on August 28, 2013
With planning, you can make separate meals. At one point, I was on an easy-to-digest diet, while everyone else was not. We got a few tools to make life easier - like a rice cooker. When I started making dinner for the rest of the family, I started up a batch of rice. One morning, I would hard boil a dozen eggs and I would schedule chicken dinners for which I would turn the carcass into broth overnight in a slow cooker.
Things that have made life way easier in general is to avoid processed foods. Just stop buying them. You know what goes in her mouth because it's whole ingredients.
As for lunches, it's hard to say. You might be able to work around her stubbornness by figuring out from the school if, instead of hot lunch, she could have a morning snack and an afternoon snack from home. Then you can give her the choice of eating a lunch from home or eating two snacks and no lunch, which admittedly is not a great choice from her point of view but at least you're getting nutrition in her more regularly.
Kids adapt. My son can't tolerate red 40. He has learned to self-regulate (he's 6).
posted by plinth at 11:09 AM on August 28, 2013
Oh yeah, and seconding what Nimmie Amee says about pain tolerance. My husband has said more than once that he thought it was totally normal to have constant stomach aches as a kid. But really, I'd just focus on taking it one day (or one meal) at a time, getting her as much "safe" food into her belly as possible. Eating is probably tied up with all sorts of psychological and physical duress for her and it's going to take time for her to relearn hunger cues and that eating doesn't equal total misery for days on end.
posted by PhoBWanKenobi at 11:10 AM on August 28, 2013 [1 favorite]
posted by PhoBWanKenobi at 11:10 AM on August 28, 2013 [1 favorite]
A couple of points that may help:
1. An elimination diet is a process and should not be considered the end point of treatment.
2. Five days is not very long to clear the potential inflammation she is dealing with. Give it 30 days to see if she improves.
3. I don't know about your location, but in Kansas a Doctor can sign a School Meal Modification Form and the school then has to provide an appropriate meal.
You might also look into meal replacement shakes to see if you can find one that she likes and fits in with the restrictions.
posted by Broken Ankle at 11:12 AM on August 28, 2013 [4 favorites]
1. An elimination diet is a process and should not be considered the end point of treatment.
2. Five days is not very long to clear the potential inflammation she is dealing with. Give it 30 days to see if she improves.
3. I don't know about your location, but in Kansas a Doctor can sign a School Meal Modification Form and the school then has to provide an appropriate meal.
You might also look into meal replacement shakes to see if you can find one that she likes and fits in with the restrictions.
posted by Broken Ankle at 11:12 AM on August 28, 2013 [4 favorites]
Ok. Take a deep breath. Complicated diets look intimidating at first, but you can totally figure out how to cook for both yourself and your little girl. Can you get a referral to an actual dietitian? They can help you sort through all the contradictory info and figure out what the next steps forward are.
Secondly, it's only been 5 days. So it's good that it's helping her constipation, but it's not surprising that all of her symptoms haven't gone away yet. Bodies take time to heal. It sounds like her entire digestive system has been upset and irritated since she was tiny. Give it time to recover, and see if you can talk to her doctor again, so that you can find out what their expectations are in terms of recovery.
Once you guys have figured out what she can and cannot eat safely, and her belly settles down, you may find that she gets less picky. She could gain even more of an appetite once her system starts functiong better, which will make it harder to skip meals just because she's feeling ornery. Since her belly has never really cooperated with her, it's not all that surprising that she's wary of a lot of food. Once she starts trusting food again, she might become more willing to try more things. But that's going to take a couple of months at least. So if she has to eat the same repetitive safe, simple foods for a while, that's the way it goes. Make sure you get the food you need too, even if that sometimes means cooking things that Lily can't/won't eat. It does neither of you any good if you get burned out trying to feed her properly.
posted by colfax at 11:27 AM on August 28, 2013 [1 favorite]
Secondly, it's only been 5 days. So it's good that it's helping her constipation, but it's not surprising that all of her symptoms haven't gone away yet. Bodies take time to heal. It sounds like her entire digestive system has been upset and irritated since she was tiny. Give it time to recover, and see if you can talk to her doctor again, so that you can find out what their expectations are in terms of recovery.
Once you guys have figured out what she can and cannot eat safely, and her belly settles down, you may find that she gets less picky. She could gain even more of an appetite once her system starts functiong better, which will make it harder to skip meals just because she's feeling ornery. Since her belly has never really cooperated with her, it's not all that surprising that she's wary of a lot of food. Once she starts trusting food again, she might become more willing to try more things. But that's going to take a couple of months at least. So if she has to eat the same repetitive safe, simple foods for a while, that's the way it goes. Make sure you get the food you need too, even if that sometimes means cooking things that Lily can't/won't eat. It does neither of you any good if you get burned out trying to feed her properly.
posted by colfax at 11:27 AM on August 28, 2013 [1 favorite]
Best answer: I have a co-worker whose child has fructose malabsorption, and they've mentioned some search terms that might be useful: "FODMAP diet" and "fructmal diet." It is definitely a gradual and ever-adapting thing rather than a finite process with an end date, so try not to feel too overwhelmed! They are able to feel much more confident about it now that they've been living and dealing with it for a couple of years; it's become more of a simple annoyance than a looming, mysterious life sentence. Everyone's fructose tolerance levels are different, though, so you will have to use trial and error to find out if your daughter can tolerate more or less fructose consumption than others with the same disorder.
Here are some resources your family might find useful -- I tried to list only those that reliably dial way back on or eliminate woo:
My FructMal Girl
Parents of Fructmal Kids on Pinterest (mostly recipes)
The Lifestyle of a FructMal
Fructose Intolerance Support Group on DailyStrength
What can I eat if I have fructose malabsorption / dietary fructose intolerance?
Fructose Friendly Foodie's Basic Pantry List
Happy & Fructose Free
I am starving! What can I eat?
Find Wholeness (Fructmal Resources)
Delicious as it Looks: Fructmal Recipes
Along with a couple of iPhone apps:
Food Intolerances
The Monash University Low FODMAP Diet
In terms of finding a reliable source to find the bottom line on minimizing fructose intake, you might use the USDA nutrient level calculator to create a report that shows the fructose levels of various foods; you can export it as a CSV for sorting or a PDF for printing. It looks like someone has already done much of the legwork for this: Excess Fructose Content of Foods. And here is a paper released by the American Dietetic Association, co-written by an MD and a dietician, titled Fructose Malabsorption and Symptoms of Irritable Bowel Syndrome: Guidelines for Effective Dietary Management.
Good luck!
posted by divined by radio at 12:15 PM on August 28, 2013 [16 favorites]
Here are some resources your family might find useful -- I tried to list only those that reliably dial way back on or eliminate woo:
My FructMal Girl
Parents of Fructmal Kids on Pinterest (mostly recipes)
The Lifestyle of a FructMal
Fructose Intolerance Support Group on DailyStrength
What can I eat if I have fructose malabsorption / dietary fructose intolerance?
Fructose Friendly Foodie's Basic Pantry List
Happy & Fructose Free
I am starving! What can I eat?
Find Wholeness (Fructmal Resources)
Delicious as it Looks: Fructmal Recipes
Along with a couple of iPhone apps:
Food Intolerances
The Monash University Low FODMAP Diet
In terms of finding a reliable source to find the bottom line on minimizing fructose intake, you might use the USDA nutrient level calculator to create a report that shows the fructose levels of various foods; you can export it as a CSV for sorting or a PDF for printing. It looks like someone has already done much of the legwork for this: Excess Fructose Content of Foods. And here is a paper released by the American Dietetic Association, co-written by an MD and a dietician, titled Fructose Malabsorption and Symptoms of Irritable Bowel Syndrome: Guidelines for Effective Dietary Management.
Good luck!
posted by divined by radio at 12:15 PM on August 28, 2013 [16 favorites]
I'm guessing that Lily is pretty good about choosing foods that don't cause pain, and that's why she does well on the school hot lunches. I'd let her eat these, and just ask her (or a lunch aid?) to report what she's eating every single day, so you have some feedback about what exactly is working for her. Perhaps someone can take a photo of what's on her plate before she eats and when she's done, and email the two to you so you can monitor her diet. This won't last forever; it's just for a few weeks or months until you have a good sense of what works for her.
What a trooper she is! And you too!
posted by Capri at 12:49 PM on August 28, 2013 [1 favorite]
What a trooper she is! And you too!
posted by Capri at 12:49 PM on August 28, 2013 [1 favorite]
Response by poster: We've seen the dietician already, from Children's. She directed us to eat low-fructose foods, and gave us the USDA handout I mentioned above -- but that is the information that's contradicted by many other sources. For example, the USDA handout says carrots are a no-go but rye flour is fine, while other sources (like the Monash University Low FODMAP diet listed above) say exactly the opposite. I don't know which set of sources to trust. They even contradict themselves -- the handout says "no pasta," but the nutrient calculator divined by radio posted says that Kraft Mac and Cheese has no fructose in it at all! I would feel a lot more comfortable if I had a source that I knew was reliable, but right now I don't know if her pain isn't going away because it's just taking time or because I'm inadvertently giving her something that is loaded with bad stuff.
posted by KathrynT at 2:00 PM on August 28, 2013
posted by KathrynT at 2:00 PM on August 28, 2013
Best answer: On the question of whether or not the diet is working - 5 days is way too soon to assume she will be pain-free. I don't have the medical knowledge to explain in scientific terms, but pain receptors are complicated and have to calm down after being barraged with triggers for years. It makes them over-stimulated. Once the inflammation goes down you will start to see an improvement in pain. My friend has multiple allergies and when she is in the middle of a painful episode, a tiny bit of an allergen (a bit of soy sauce) will cause massive amounts of pain, whereas when she's healthy, the same amount won't be nearly as painful. It takes her about 30-45 days to feel better after weeks of pain. Given that Lily has been going through this for years, the fact that her bowels are already improving is a GREAT sign.
Hang in there. This is like being confronted with a huge move to a new country, all of a sudden. New rules, some of which are written down for you, and some of which you'll have to figure out. New words, language, customs, food, and it will take months to adjust. But you will figure it out. There will be some rough patches along the way but keep your eye on the prize. You can do it!
posted by barnone at 2:16 PM on August 28, 2013 [1 favorite]
Hang in there. This is like being confronted with a huge move to a new country, all of a sudden. New rules, some of which are written down for you, and some of which you'll have to figure out. New words, language, customs, food, and it will take months to adjust. But you will figure it out. There will be some rough patches along the way but keep your eye on the prize. You can do it!
posted by barnone at 2:16 PM on August 28, 2013 [1 favorite]
Find another dietician in your area. You will probably be working with them over several appointments over the next few months or a year. Shop around for one you respect and like. You can't fix it overnight and there IS going to be conflicting advice out there, so you want someone to help you make good guesses and - most importantly - refine those suggestions based on the results with Lily.
posted by barnone at 2:39 PM on August 28, 2013 [1 favorite]
posted by barnone at 2:39 PM on August 28, 2013 [1 favorite]
Looking over the school lunch menu, there seem to be lots of selections where the vast majority of the carbohydrates are going to be glucose, not fructose (i.e. starches).
This is not like an allergy where even a tiny bit of the allergen can elicit a full on attack, but rather a condition where she her tolerance for fructose is reduced. In your shoes, I'd start with the obvious high fructose foods and beverages (The ones almost all your sources agree on) and see how things shake out.
Just looking around, carrots are about 5 g of fructose per 200 cal. serving while the most fructose rich starch (Wild rice, cooked) is a mere 0.4 g of fructose per 200 cal. and normal wheat flour only 0.02 g per 200 cal. serving. I think part of your issue might be that FODMAP is primarily designed for IBS which is a different condition (despite similar symptoms) so FODMAP is strongly avoiding things besides just fructose that your daughter may have no trouble with whatsoever.
posted by Kid Charlemagne at 2:52 PM on August 28, 2013
This is not like an allergy where even a tiny bit of the allergen can elicit a full on attack, but rather a condition where she her tolerance for fructose is reduced. In your shoes, I'd start with the obvious high fructose foods and beverages (The ones almost all your sources agree on) and see how things shake out.
Just looking around, carrots are about 5 g of fructose per 200 cal. serving while the most fructose rich starch (Wild rice, cooked) is a mere 0.4 g of fructose per 200 cal. and normal wheat flour only 0.02 g per 200 cal. serving. I think part of your issue might be that FODMAP is primarily designed for IBS which is a different condition (despite similar symptoms) so FODMAP is strongly avoiding things besides just fructose that your daughter may have no trouble with whatsoever.
posted by Kid Charlemagne at 2:52 PM on August 28, 2013
Response by poster: One of the other issues is that many foods which are low in fructose are high in fructans, which some people say are no big deal and other people say are death on a stick. Wheat flour is high in fructans, for example. Finding sources of foods which are high / low in fructans is even harder than finding sources of foods which are high / low in fructose, and frustratingly, many well-meaning sources combine the two.
posted by KathrynT at 4:41 PM on August 28, 2013
posted by KathrynT at 4:41 PM on August 28, 2013
I don't know how the school system works where you live. But, where I live, this would be grounds for applying for a health designation in the school system. It means the school system has to accommodate your child's health issues and even put together an IEP. I would recommend emailing the principal this week to ask if this is a possibility and what they would need. (It may be worth investing in the help of an educational-psychologist or pediatrician for this paperwork.) Memail me if you need more info.
posted by Chaussette and the Pussy Cats at 5:56 PM on August 28, 2013
posted by Chaussette and the Pussy Cats at 5:56 PM on August 28, 2013
Best answer: Have you read this one? It's long but seems pretty useful.
Skip down to the "Expanding the concepts..." section:
"All FODMAPs share both osmotic effects in the colon and rapid fermentability by bacteria. It is likely that these effects will be additive when combinations of FODMAPs are delivered to the colon as might be anticipated to occur following the ingestion of food, as seen for fructose-sorbitol and fructan-lactose combinations. It makes sense then that, if dietary intervention were planned to reduce these events, FODMAPs should be considered as a whole and not as individual items as has been the general trend in the past. For example, if a patient with IBS was found to have fructose and lactose malabsorption on breath hydrogen testing, dietary restriction should involve attention to free fructose and lactose intake, as well as the additional restriction of fructans, galactans and polyols."
The section after that on the efficacy of dietary intervention seems useful too. You could look back to the primary literature on some of these studies to see exactly what diet they're using. The evidence is limited, so the answer may be mainly that the scientific community needs more information and you may need to do some experimentation.
posted by treehorn+bunny at 8:34 PM on August 28, 2013 [1 favorite]
Skip down to the "Expanding the concepts..." section:
"All FODMAPs share both osmotic effects in the colon and rapid fermentability by bacteria. It is likely that these effects will be additive when combinations of FODMAPs are delivered to the colon as might be anticipated to occur following the ingestion of food, as seen for fructose-sorbitol and fructan-lactose combinations. It makes sense then that, if dietary intervention were planned to reduce these events, FODMAPs should be considered as a whole and not as individual items as has been the general trend in the past. For example, if a patient with IBS was found to have fructose and lactose malabsorption on breath hydrogen testing, dietary restriction should involve attention to free fructose and lactose intake, as well as the additional restriction of fructans, galactans and polyols."
The section after that on the efficacy of dietary intervention seems useful too. You could look back to the primary literature on some of these studies to see exactly what diet they're using. The evidence is limited, so the answer may be mainly that the scientific community needs more information and you may need to do some experimentation.
posted by treehorn+bunny at 8:34 PM on August 28, 2013 [1 favorite]
My kid refuses to eat at school because of anxiety issues. We work around that by making sure he has a big breakfast and feeding him immediately when he comes home. It is a huge deal to my husband who feels like a bad parent for his kid going hungry and , but we've come to grudgingly accept that this is a battle we cannot win.
We tried packed lunches of favourite snacks which worked for a while until he got teased about bringing them in and he started trashing them. Try buying her a really fancy cool lunchbox and putting her absolute favourite diet-appropriate snacks, no matter how non-nutritious they are. You can then add some more appropriate things once she's okay with taking a packed lunch in. If she won't do a meal, maybe she will do a thermos of some healthy smoothie that she can drink like a milkshake.
I wouldn't trust a kid to chose healthy food that doesn't cause pain unless it's an immediate feedback, and this sounds delayed. She would probably rather eat something delicious with her friends and suffer later at home, than make a rational but unpopular choice. Change the options and work around this because at home, you can compensate with healthy food.
My husband really struggles with my son's food issues because he is a good healthy eater himself. I am a terrible eater due to health and emotional issues, and as a result happily skip meals and ignore pain, so I am much more accepting of the food issues because I know they are not intentional by the child. Food is so basic to parenting though, so prepare yourself to feel super emotional and upset over this, out of logical proportion because this taps into core stuff.
There is nothing wrong with her having a different meal to the rest of the family. I eat a different meal to my family 80% of the time. The important thing is sitting at a table together, not what's on the plate. It's good for her to see other people eating regular food and she can sample bits while she has her own special meals. If you can freeze single servings of her favourites ahead, it'll help with prep time.
Oh - we did a snack trial that was a lot of fun and helped at one point. We went to the supermarket and would pick up new and weird things that fit his requirements and then sample them. Treating that as a culinary experiment made it a positive parenting experience, rather than yet another grim battle.
posted by viggorlijah at 8:55 PM on August 28, 2013
We tried packed lunches of favourite snacks which worked for a while until he got teased about bringing them in and he started trashing them. Try buying her a really fancy cool lunchbox and putting her absolute favourite diet-appropriate snacks, no matter how non-nutritious they are. You can then add some more appropriate things once she's okay with taking a packed lunch in. If she won't do a meal, maybe she will do a thermos of some healthy smoothie that she can drink like a milkshake.
I wouldn't trust a kid to chose healthy food that doesn't cause pain unless it's an immediate feedback, and this sounds delayed. She would probably rather eat something delicious with her friends and suffer later at home, than make a rational but unpopular choice. Change the options and work around this because at home, you can compensate with healthy food.
My husband really struggles with my son's food issues because he is a good healthy eater himself. I am a terrible eater due to health and emotional issues, and as a result happily skip meals and ignore pain, so I am much more accepting of the food issues because I know they are not intentional by the child. Food is so basic to parenting though, so prepare yourself to feel super emotional and upset over this, out of logical proportion because this taps into core stuff.
There is nothing wrong with her having a different meal to the rest of the family. I eat a different meal to my family 80% of the time. The important thing is sitting at a table together, not what's on the plate. It's good for her to see other people eating regular food and she can sample bits while she has her own special meals. If you can freeze single servings of her favourites ahead, it'll help with prep time.
Oh - we did a snack trial that was a lot of fun and helped at one point. We went to the supermarket and would pick up new and weird things that fit his requirements and then sample them. Treating that as a culinary experiment made it a positive parenting experience, rather than yet another grim battle.
posted by viggorlijah at 8:55 PM on August 28, 2013
Best answer: So I used to work in a gut heath research group for my PhD and, while I was working specifically on inflammatory bowel disease, with my background in digestive physiology and 20+ years of IBD I kept up with the literature and interacted professionally with a lot of researchers on sugar malabsorption as part of my research.
FODMAP stands for Fermentable, Oligo-, Di-, Mono-saccharides And Polyols, in other words it's referring to a range of different sugars, not just fructose. And generally patients only have problems with some of them rather than all, with the specific subset varying by patient, which is why it is diagnosed by breath testing rather than the elimination diet that the internet wants to sell you. This is probably one reason at least why you're getting inconsistencies when comparing data sources, the FODMAP ones are aimed at ruling out a wider range of molecules than just fructose.
So my first question would be has your daughter been tested for the full panel? The standard recommendation in the literature is, for paediatric patients in particular, to only eliminate the smallest number of foods necessary, so testing for everything then only avoiding the ones she has a known malabsorption for rather than just cutting out a wide range of food and hoping you get the right ones. So if she has intolerances for other FODMAPs you want to know so you can avoid them, and if she doesn't you want to know so you can be sure to keep including them. This is difficult to get right of course, so it's more of an aim than a rigid necessity. Note: I realise that this is different from the advice in that paper treehorn-bunny is linking to, but that is from 2006. This is a relatively new field so that is too old, paediatric advice is often different anyway, and that recommendation doesn't match what I've been told directly by leading researchers in the field (or really make a huge amount of sense to me). Again, this is why you need someone actually working and up-to-date in this area to talk with rather than random information from the internet (including mine, I haven't read anything beyond early 2011 so who knows what is done now).
It's a pity the dietician you saw so far wasn't very good because you really do need to be working with qualified professionals for this. You probably need a gastroenterologist specialising in this area (IBD and sugar intolerances) and definitely a registered dietician with experience with this stuff. The former can usually refer you to the latter. You can already see from your searching that the information is complicated and there is a lot of crap out there (like all nutrition research unfortunately), and it can also be somewhat personalised between patients. So I'd urge you to keep trying on that front and see if you can find someone to work with who actually knows what they're talking about rather than being left guessing as you are now.
You do seem to be on the right track, and improvement in such a short time is really good. It is pretty common for food intolerances that you need to cut back on everything really strictly after a flare, which is basically what your poor girl has had for the last however many years, to let the intestinal lining heal and recover. Then when things have settled down again you can introduce back different things and she may be able to get away with small amounts of fructose or whatever in the interests of a wider diet and easier life. But this process is usually done with a professional so again, finding a decent dietician would be really helpful. Also, the inflammation and unhappiness from the flare can complicate the symptoms and things and can also explain why her history doesn't seem clear cut and understandable. Tracking down food intolerances is really difficult which is why those breath tests are so great.
posted by shelleycat at 4:22 AM on August 29, 2013 [8 favorites]
FODMAP stands for Fermentable, Oligo-, Di-, Mono-saccharides And Polyols, in other words it's referring to a range of different sugars, not just fructose. And generally patients only have problems with some of them rather than all, with the specific subset varying by patient, which is why it is diagnosed by breath testing rather than the elimination diet that the internet wants to sell you. This is probably one reason at least why you're getting inconsistencies when comparing data sources, the FODMAP ones are aimed at ruling out a wider range of molecules than just fructose.
So my first question would be has your daughter been tested for the full panel? The standard recommendation in the literature is, for paediatric patients in particular, to only eliminate the smallest number of foods necessary, so testing for everything then only avoiding the ones she has a known malabsorption for rather than just cutting out a wide range of food and hoping you get the right ones. So if she has intolerances for other FODMAPs you want to know so you can avoid them, and if she doesn't you want to know so you can be sure to keep including them. This is difficult to get right of course, so it's more of an aim than a rigid necessity. Note: I realise that this is different from the advice in that paper treehorn-bunny is linking to, but that is from 2006. This is a relatively new field so that is too old, paediatric advice is often different anyway, and that recommendation doesn't match what I've been told directly by leading researchers in the field (or really make a huge amount of sense to me). Again, this is why you need someone actually working and up-to-date in this area to talk with rather than random information from the internet (including mine, I haven't read anything beyond early 2011 so who knows what is done now).
It's a pity the dietician you saw so far wasn't very good because you really do need to be working with qualified professionals for this. You probably need a gastroenterologist specialising in this area (IBD and sugar intolerances) and definitely a registered dietician with experience with this stuff. The former can usually refer you to the latter. You can already see from your searching that the information is complicated and there is a lot of crap out there (like all nutrition research unfortunately), and it can also be somewhat personalised between patients. So I'd urge you to keep trying on that front and see if you can find someone to work with who actually knows what they're talking about rather than being left guessing as you are now.
You do seem to be on the right track, and improvement in such a short time is really good. It is pretty common for food intolerances that you need to cut back on everything really strictly after a flare, which is basically what your poor girl has had for the last however many years, to let the intestinal lining heal and recover. Then when things have settled down again you can introduce back different things and she may be able to get away with small amounts of fructose or whatever in the interests of a wider diet and easier life. But this process is usually done with a professional so again, finding a decent dietician would be really helpful. Also, the inflammation and unhappiness from the flare can complicate the symptoms and things and can also explain why her history doesn't seem clear cut and understandable. Tracking down food intolerances is really difficult which is why those breath tests are so great.
posted by shelleycat at 4:22 AM on August 29, 2013 [8 favorites]
Response by poster: Shelleycat, your memail is disabled -- if you're willing to answer a few questions, could you email me at the address in my profile?
"Tested for the full panel" -- I don't really know what this means. She had the breath test, but fructose was the only challenge.
Part of what is so frustrating for me is that I am your typical overinformed, undereducated patient; I spend a lot of time on Google, and my lay scientific background makes it easier for me to read scientific / medical information and differentiate it from woo than most people's (both my parents are scientists, though I am not), and while I understand that Internet Medical School is not Real Medical School, it usually means that I can come into these appointments with some kind of basic grasp on the issues at hand. I feel like I have a decent grasp of why and how excess fructose is causing her problems, for example. But I kind of feel like I've been told "Avoid foods high in fructose! We have placed all the forbidden foods inside this box; you may identify them only by feel. Also periodically one of them will be switched out for another, but we won't tell you which or when."
What I have managed to figure out since I wrote this AskMe is that there are three different concepts that various sources label as "fructose content;" total fructose, fructose in excess of glucose, and fructans. The various sources aren't always clear as to which concept they're referring to, AND the scientific community isn't clear as to which of these concepts is the most important. In fact, different patients may (do?) have different requirements. This is why some fruits can be listed as A-OK in one source but no-go in another, is because they have a lot of fructose, but not a lot of fructose in excess of glucose. Now that I understand this, I think I need to make an appointment with the dietician again and ask her which concept her cutoff (0.5g fructose per 100g) refers to, because different choices there generate very different lists of allowed foods.
I also sat down with Lily last night and had a conversation about the school hot lunch. The good news is, she very much understands what is at stake here, and she understands what the problem is (we overheard her explaining her dietary issues to a neighborhood friend and getting it pretty much bang on). I told her that if her tummy stopped hurting before school started, we would give the school lunch a limited trial, but otherwise, I was going to pack her lunch until her tummy stopped hurting. She was unhappy about this but understood why it was important. I also told her that we would go shopping together and buy a lot of foods that she was interested in that looked good. We discussed what kinds of food she loves that will NEVER show up on a school lunch -- she has made me promise to pack her a lunch of shrimp, prosciutto, and black olives -- and while she's not super-gung-ho excited, she is sort of provisionally on board.
Thank you to everyone for your answers, I feel much less freaked out now. All I have to do now is figure how to manage the guilt that comes from years of having internally rolled my eyes at parents of children who need Special Snowflaked diets, now that my kid needs the Speciallest Snowflakiest diet of them all.
posted by KathrynT at 8:38 AM on August 29, 2013 [4 favorites]
"Tested for the full panel" -- I don't really know what this means. She had the breath test, but fructose was the only challenge.
Part of what is so frustrating for me is that I am your typical overinformed, undereducated patient; I spend a lot of time on Google, and my lay scientific background makes it easier for me to read scientific / medical information and differentiate it from woo than most people's (both my parents are scientists, though I am not), and while I understand that Internet Medical School is not Real Medical School, it usually means that I can come into these appointments with some kind of basic grasp on the issues at hand. I feel like I have a decent grasp of why and how excess fructose is causing her problems, for example. But I kind of feel like I've been told "Avoid foods high in fructose! We have placed all the forbidden foods inside this box; you may identify them only by feel. Also periodically one of them will be switched out for another, but we won't tell you which or when."
What I have managed to figure out since I wrote this AskMe is that there are three different concepts that various sources label as "fructose content;" total fructose, fructose in excess of glucose, and fructans. The various sources aren't always clear as to which concept they're referring to, AND the scientific community isn't clear as to which of these concepts is the most important. In fact, different patients may (do?) have different requirements. This is why some fruits can be listed as A-OK in one source but no-go in another, is because they have a lot of fructose, but not a lot of fructose in excess of glucose. Now that I understand this, I think I need to make an appointment with the dietician again and ask her which concept her cutoff (0.5g fructose per 100g) refers to, because different choices there generate very different lists of allowed foods.
I also sat down with Lily last night and had a conversation about the school hot lunch. The good news is, she very much understands what is at stake here, and she understands what the problem is (we overheard her explaining her dietary issues to a neighborhood friend and getting it pretty much bang on). I told her that if her tummy stopped hurting before school started, we would give the school lunch a limited trial, but otherwise, I was going to pack her lunch until her tummy stopped hurting. She was unhappy about this but understood why it was important. I also told her that we would go shopping together and buy a lot of foods that she was interested in that looked good. We discussed what kinds of food she loves that will NEVER show up on a school lunch -- she has made me promise to pack her a lunch of shrimp, prosciutto, and black olives -- and while she's not super-gung-ho excited, she is sort of provisionally on board.
Thank you to everyone for your answers, I feel much less freaked out now. All I have to do now is figure how to manage the guilt that comes from years of having internally rolled my eyes at parents of children who need Special Snowflaked diets, now that my kid needs the Speciallest Snowflakiest diet of them all.
posted by KathrynT at 8:38 AM on August 29, 2013 [4 favorites]
Response by poster: An update: after three weeks on the low-fructose diet with definite improvement (apart from a setback caused when we went a little crazy with sucrose), we re-introduced wheat, which had an additional immediately beneficial effect on Lily's digestion. Following that, we had a totally unremarkable visit to the GI clinic, including a completely normal GI exam, and were discharged from the GI clinic! We're now bringing in new vegetables about twice a week, and once I have a solid baseline of those, I'll try raising her dietary sugar limits somewhat and see if we can find a happy medium.
She is a different child. Happy, energetic, much less prone to exasperating fits of stubbornness. She has gained enough weight that she is no longer clinically underweight, she is sleeping better, she has an actual appetite. She's frustrated by the dietary limits but extremely motivated to conform to them, because she knows how much better she feels. Once wheat came back into her diet, she was able to move back to the school lunch -- thank you, Michelle Obama, for getting the sugar content of school lunches down -- which makes both her and me very happy, because the promised shrimp and prosciutto lunches were getting pricey. Her color is back, she's excelling at her school work, and in general this has been absolutely the fix that she needed.
posted by KathrynT at 9:11 AM on September 20, 2013 [8 favorites]
She is a different child. Happy, energetic, much less prone to exasperating fits of stubbornness. She has gained enough weight that she is no longer clinically underweight, she is sleeping better, she has an actual appetite. She's frustrated by the dietary limits but extremely motivated to conform to them, because she knows how much better she feels. Once wheat came back into her diet, she was able to move back to the school lunch -- thank you, Michelle Obama, for getting the sugar content of school lunches down -- which makes both her and me very happy, because the promised shrimp and prosciutto lunches were getting pricey. Her color is back, she's excelling at her school work, and in general this has been absolutely the fix that she needed.
posted by KathrynT at 9:11 AM on September 20, 2013 [8 favorites]
That's truly amazing. It sounds like it was absolutely the fix she needed, and that all of you needed! I can only imagine some of the stress it was causing for all of you. I hope the constraints become more and more manageable. Thanks for the update and best of luck for continued improvement. :-)
posted by barnone at 9:21 AM on September 20, 2013
posted by barnone at 9:21 AM on September 20, 2013
Response by poster: A further update, from four months in: My daughter's digestion is now 100% normal, and she's in almost no GI pain at all. We now see the effects from "food mistakes" within hours instead of days. We had a lot of frustrating ups and downs, and finally in a fit of misery we eliminated almost everything plant-based from her diet except for white rice, peeled potatoes, foods made from high-protein bleached white wheat flour, and peanut butter. That did the trick. I was worried about nutrition, but we found a multivitamin she can handle (Thorne Children's Basic Nutrients, it's a small capsule rather than a chewable, but she can swallow them since they're small) so I'm grudgingly OK. On the advice of her pediatrician, we're going to keep to this incredibly restricted diet for several months, to let her gut truly heal from years of chronic insult -- I'm exaggerating the extent of the restrictions, but not by very much, she's on no legumes, no nuts, no seeds, no whole grains, and less than a quarter cup of fruits and vegetables TOTAL per day, from an extremely short list.
If other people are reading this in the future and you are frustrated because you're not seeing good results, you may have to get much, much more restrictive than you wish you did. It is probably not permanent, but just like you have to stay off a sprained ankle and let it heal, we have got to let her gut recover. I wish I had made that call sooner, but I really didn't want that to be true.
posted by KathrynT at 11:37 PM on January 26, 2014 [1 favorite]
If other people are reading this in the future and you are frustrated because you're not seeing good results, you may have to get much, much more restrictive than you wish you did. It is probably not permanent, but just like you have to stay off a sprained ankle and let it heal, we have got to let her gut recover. I wish I had made that call sooner, but I really didn't want that to be true.
posted by KathrynT at 11:37 PM on January 26, 2014 [1 favorite]
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As for trying to get everyone to eat the same meals, it just may not be possible. I cook for me (more low-carb, lots of protein and veggies) and for Husbunny (complex carbs and meat, no veggies or fruit.) We're two different people with two different metabolisms and two different food preferences.
Start making meals with a couple of extra side dishes. So meat, veggies, salad, and rice or potatoes. Everyone can pick what appeals.
Yes, it's hard being the odd one out, but if you have a digestive issue, or diabetes or some other reason to follow a particular diet, that's part of your reality.
The other thing is, experiment with her eating the school lunch, and see what it gets you. Who knows, there may be other forces at work and for whatever reason, what she chooses is right for her.
But for sure, get good dietary instruction from an RD.
posted by Ruthless Bunny at 10:43 AM on August 28, 2013