You may not have ever heard of Fructose Malabsorption, which would be totally understandable since most doctors haven’t heard of it either. It’s estimated that 75% of those with IBS actually have FM. The good news is that there is an actual test for FM. Never again will I have to listen to someone tell me my daughter’s food difficulties are all in my head or that she's faking just to get out of eating her vegetables. She has FM; she cannot handle most foods.
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My daughter has a strange history with food. We adopted her from Russia when she was seven months old. On our first visit to meet her, the doctor told us her rash was probably due to a milk allergy so we bought a six week supply of soy formula to be used while we completed the adoption. She was hospitalized twice with diarrhea. We had her tested for soy and milk allergies after bringing her home, but the tests found nothing of concern. Her rash would come and go, but there was no good explanation for it.
Kgirl always seemed so hungry. She would just shake whenever I was feeding her. It was the weirdest thing – it was almost like she was sucking the bottle using force generated from her toes. Coming from a background of such deprivation, that didn’t surprise me, but the hunger continued for years. Her preschool teachers were always mentioned how much food she ate at snack time. I wasn’t sure if they were planned on charging me extra or thinking about reporting us to Child Services (that isn’t meant as a joke – her teachers just wouldn’t believe that I fed her a HUGE breakfast before school or that she needed a snack on the car ride home because she couldn’t wait for lunch.)
Along with the ravenous appetite that could never be satiated, Kgirl was in constant motion. Not a hyper, running wild type of motion. It was more of a shaking, bouncing, gesturing type of thing. She walked like Steve Martin’s Wild and Crazy Guy. She was also amazingly loud – she talked as if she were having a conversation in the front row of an AC/DC concert. No one could believe this little peanut of a kid could produce so much sound.
And a peanut, she was. At her two year checkup, she weighed 18 pounds – I still remember chuckling that she wasn’t heavy enough to come out of the rear-facing car seat. At four, she weighed 28 pounds. But she kept on eating. She was always a happy kid, but she would get completely overwhelmed with various situations and just totally fall apart. She could not figure out how to get dressed in the morning. Literally, she had no idea how to pull on a pair of pants and she would lay on the floor and cry. She could put on her pajamas after dinner, but that knowledge did not transfer towards other clothing. Some days she could recite the alphabet and answer all manners of questions, but then the next day she couldn’t get past the first four letters.
It took me until she was five to realize that her crying, whining, and confusion were coming from hunger. I never realized it before because it turns out that she became ravenous every 90 minutes. I had no more than two hours between meals before she completely fell apart. Every time I heard the slightest whine in her voice, I stuffed some food in her mouth and she was smiling again.
Despite all this food, she never gained weight. Her pediatrician finally sent us for some testing when Kgirl turned seven. She was 34 pounds. Her Body Mass Index ranged from a 9.4 to 11.2 – according to the CDC, that puts her "below the bottom 1%". Our first visit was with an endocrinologist – Kgirl has no growth hormone deficiencies, her thyroid is fine, she has no food allergies. He sent us to a nutritionist. She looked over Kgirls list of daily foods and calculated she ate, on average, 3,000 calories a day and took in about 85 grams of fat – and lost 2 pounds in six weeks. We were sent to a gastroenterologist.
He ran a number of tests and determined that Kgirl has pancreatic insufficiency (and atypical cystic fibrosis.) He called on a Saturday afternoon and said he wanted her on enzymes as of dinner that night. She took her first three pills that evening – and she sat down in her chair, her voice dropped to a normal kid sound, she walked straight, with none of the "wild and crazy guy" moves. And in the morning, she came downstairs smiling and said "good morning, mom." It was the first morning that she ever woke up without tears. I just sat there and cried happy tears.
And yet, she still didn’t put on weight. Her doctor continued running tests, but he couldn’t find anything else to explain why. Now that she was on enzymes, I told him that I was seeing a lot of those old behavioral issues when she ate sugar. She had tests for celiac; for food allergies; she drank barium to test her upper GI tract; she ate radioactive eggs to see if her stomach emptied okay. Nothing explained why she wasn’t gaining weight. She even got a feeding tube running through her nose to add some calories at night, but she stopped eating during the day.
At each appointment, I mentioned again that she completely changed her personality when she ate sugar. Her doctor said that parents mention that all the time, but there is no medical reason for behavior to change with sugar – "but for what it’s worth, I believe you. I just can’t explain it." I kept removing more and more items from her diet. I kept the calorie count up, but took away anything with High Fructose Corn Syrup, processed meats, ice cream, and chewing gum.
Kgirl’s nutritionist suggested she may have hypoglycemia, but the situation grew increasingly difficult. It was when I read up on hypoglycemia that I found what I believed to be the answer: Fructose Malabsorption. The pediatrician did a stool sample test, but it showed nothing. I was devastated because I was sure that was it.
It was the zucchini that changed everything. Kgirl had an entire zucchini and she went absolutely nuts. When I mentioned this to her gastroenterologist, he asked a number of questions about stomach pain and gas. We (her doctor and I) always attributed her pains and gas to the pancreatic insufficiency, but he ordered a hydrogen breath test to test for FM – that had been ruled out with the stool sample.
Kgirl had to do an overnight fast, then in the morning she drank a glass of fructose. She said she was going to throw up, but I managed to get her to finish. Within 15 minutes, she was sprinting for the bathroom; with 90 minutes she had watery diarrhea. She had to puff into a tube to get a hydrogen level and then breathe again every 30 minutes. If it registered 20 points above her base reading for three readings in a row, it would be positive. Her readings went as high as 230 – finally an answer...
She is not supposed to eat fruit, sugar, honey, molasses, sugar substitutes, most vegetables, wheat, brown rice, or anything with sorbitol (ice cream, chewing gum). Potatoes are iffy, oats aren’t looking promising and it looks like she can’t handle dairy either. It’s like a hypoglycemic, gluten-free and lactose diet, without all the convenience. Most of the gluten-free products contain brown rice or corn flour, so those are out. Hypoglycemic products use fruit or beet juice or use inulin – those are totally out. I can no longer buy any processed foods for her. Grabbing a snack is not easy; eating out is harder.
So far, the only foods that don’t cause a stomachache are plain chicken or beef, white rice, black olives, and red pepper. Not a fun diet for a nine-year-old. But in the month that we’ve been doing the diet, she has gained almost three pounds. She can sit still. She has found her "inside voice". She is happy. So am I.