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.