stringbean
New member
I think every time I've ever posted a message, it had to do with my daughter's inability to increase her weight. And 10 days ago, we finally got an answer to why. She has something called Fructose Malabsorption. I've been pulling things out of her diet for years because I was convinced that it made her hyper or worse and her gastro doc expressed more than a little concern that I was taking too much away. When he called with the test results, he told me to take EVERYTHING out of her diet, to follow the FM diet to a tee.
She can't have sugar, honey, brown sugar, molasses, maple syrup, most fruits, some vegetables, sugar substitutes, anything with sorbitol, wheat, yogurt, brown rice, chewing gum, most toothpastes... So apples, pears, watermelon, grapes, raisins, cherries, bananas and peaches are out. Anything made with fruit juices is out. Anything made with beet juice, gone. Coconut, gone. Carrots and corn and peas and tomatoes seem to be out. Onions, garlic, and leeks, gone. Potatoes are a gray area. Anything made with tomatoes like ketchup and barbeque sauce also gone. Mayonnaise, booted. Yogurt or anything with probiotics, out. Salami and bacon are gone. She's already shown that she can't handle most of the foods on the "maybe" list, so asparagus, zuchini, artichokes, and pineapples are out. Anything with inulin, like Glucerna bars or the formula she had on with the NG tube, out. Actually, the list of additives she can't handle is so long, we just do without any processed foods at all. She can eat poultry, fish, and beef (without sauce), eggs, white rice, celery, lettuce (without dressing), oatmeal, stevia, and nuts. Dairy is not looking good right now; soy is suspect as well. Thanksgiving was fun!
And before I could get too comfortable thinking that this could explain her borderline sweat test results and maybe, just maybe, they would reevaluate the entire atypical CF diagnosis -- we saw the pulmonologist this morning. He officially diagnosed her with asthma (her pediatrician had mentioned that last Spring, but no one else agreed). Her FEV1 (do I have that right?) was at 79, so her doctor said it was barely out of the normal range, but wants her on daily medication. Ugh. She gets so crazy on these meds, so I am not excited about the next few weeks while we seek the one medication that doesn't make her totally insane.
But on the plus side, despite removing at least 1,000 calories a day from her diet while I search for something to feed her, she is actually starting to <i>gain some weight</i>!!!!! So we've got that going for us...
She can't have sugar, honey, brown sugar, molasses, maple syrup, most fruits, some vegetables, sugar substitutes, anything with sorbitol, wheat, yogurt, brown rice, chewing gum, most toothpastes... So apples, pears, watermelon, grapes, raisins, cherries, bananas and peaches are out. Anything made with fruit juices is out. Anything made with beet juice, gone. Coconut, gone. Carrots and corn and peas and tomatoes seem to be out. Onions, garlic, and leeks, gone. Potatoes are a gray area. Anything made with tomatoes like ketchup and barbeque sauce also gone. Mayonnaise, booted. Yogurt or anything with probiotics, out. Salami and bacon are gone. She's already shown that she can't handle most of the foods on the "maybe" list, so asparagus, zuchini, artichokes, and pineapples are out. Anything with inulin, like Glucerna bars or the formula she had on with the NG tube, out. Actually, the list of additives she can't handle is so long, we just do without any processed foods at all. She can eat poultry, fish, and beef (without sauce), eggs, white rice, celery, lettuce (without dressing), oatmeal, stevia, and nuts. Dairy is not looking good right now; soy is suspect as well. Thanksgiving was fun!
And before I could get too comfortable thinking that this could explain her borderline sweat test results and maybe, just maybe, they would reevaluate the entire atypical CF diagnosis -- we saw the pulmonologist this morning. He officially diagnosed her with asthma (her pediatrician had mentioned that last Spring, but no one else agreed). Her FEV1 (do I have that right?) was at 79, so her doctor said it was barely out of the normal range, but wants her on daily medication. Ugh. She gets so crazy on these meds, so I am not excited about the next few weeks while we seek the one medication that doesn't make her totally insane.
But on the plus side, despite removing at least 1,000 calories a day from her diet while I search for something to feed her, she is actually starting to <i>gain some weight</i>!!!!! So we've got that going for us...