Finally made it back to the forums!
I've read about HFI - I don't think he has that given the fairly large amount of fructose DS ate as a baby (in the form of fruit.) HFI creates pretty severe symptoms since sufferers can't tolerate ANY amount of fructose whatsoever. DS's problems didn't really kick into full gear until around age two. At that time he was wolfing down baked pears and apples all the time, eating a lot of wheat (fructans) often sweetened with honey. He was also consuming lots of tomatoes, corn, sweet potatoes and carrots. His symptoms were all confined to diaper area irritation (sometimes severe), holding back BMs and soft stools.
We kept meticulous food journals but could never seem to pinpoint the problem. Everything seemed to bother him. We cut out all the major allergens and it seemed to help but he still wasn't 100%. Retrospectively, what we didn't realize that when we cut wheat/gluten we cut a huge source of fructans. When we cut the foods we prepared with wheat, we cut even more fructose. When we cut tomatoes and corn, we cut out big sources of fructose. When we cut dairy, we cut lactose (many people with FM have *some* level of intolerance to lactose and so does DS.) We cut out pears and prunes when his stool was soft, but were actually eliminating one of the largest sources of fructose in his diet. Prunes were a double-whammy (like wheat) because sorbitol (like fructans) makes it even more difficult to absorb fructose.
Retrospectively, we connected all the wrong things. For example, it wasn't the Teff flour in the graham cracker recipe I tried - it was the HONEY. It wasn't the wheat/gluten/oats that bothered him, it was the MOLASSES and BROWN SUGAR. It wasn't corn that was bothering him, it was the fructose in it (and everything else.) It suddenly made sense why he was okay with a few baked sweet potatoes but a sweet potato hash with boiled sweet potatoes (sugar content different than baked), maple syrup (lots of fructose) and onions (lots of fructans) bothered him terribly. I thought it was the onion and it was - sorta, but not for the reasons I thought.
The turning point came oddly after we all got the flu (probably swine) this year. DH and DS faired pretty well but I was pretty miserable for a few days. While I was miserable, DH was in charge of fixing meals for DS. He stuck to foods we thought we knew were safe - the problem was he didn't limit the foods (I always made a lot of different foods and never let DS overload on any one thing. Even though we were doing a lot better, we still hadn't pinpointed exactly what was causing his reactions and I had migrated to feeding him smorgasboard style because I knew it helped. Now I realize it was helping to reduce fructose consumption.) One food DS loved and DH found easy to fix was sweet potatoes - he ate a ton of them for several days in a row. DH also switched to boiling them instead of baking them since it was quicker. DS ended up with a delayed and *horrible* diaper rash. Given that we had gone a while without a big reaction, we knew without a doubt that it was the sweet potatoes and that somehow boiling them made a difference. We thought maybe sals, especially given he had a puffy right eye and lip that we saw a ped about following his flu recovery. But we didn't think the cooking method would affect sals. Suddenly, it dawned on me - sugar. Have you ever eaten a boiled sweet potato? It isn't at all sweet like a slowly baked one. I started researching a bit and found that the sugars in food are altered by cooking method. I never nailed down exactly how a boiled and baked sweet potato differ in sugar content but I knew I was finally on to something.
So we tried a low-fructose diet. WORLD of difference. Ultimately, DS has gone from holding back BMs completely to reluctantly going little bits at a time in his diaper to reluctantly going on the potty to willingly going on the potty!
We are currently still wheat/gluten free due to the fructans in wheat but we have introduced regular oats (sweetened only with a little sunbutter
) without issue. I really don't think gluten is a problem (especially given that neither DH or I have the gene that most all celiacs have.) We're going to try a regular (not-certified gluten free) corn tortilla next (refined corn is okay). We may try a little wheat down the road -- something like a rye (no fructans) sourdough bread with only a little refined wheat (sourdoughs has been reported to be better tolerated likely due to fructan alteration in the culturing process.) Overally, though, I'm still really skeptical of wheat due to fructans and I'm in no hurry to add it, or gluten for that matter, back. I mostly just want a little flexibility with diet (a little wheat-tainted oats, for instance) and to not have to avoid gluten like the plague.
Overall though, we're pretty sure that we've *finally* nailed it down. But boy oh boy, was it tough to figure out.
It is still difficult to prepare meals with any kind of variety and we're still eating a lot of rice but things are easier. He can eat some dairy, white/yellow potatoes, refined corn and oatmeal. And now that he is healing (and/or getting older) his fructose tolerance seems to be increasing a bit. He can handle a few sweet potatoes or carrots every other day, a little whole corn here and there, a little bit of evaporated cane juice (in some gluten free mixes we've found) and a little plain white sugar (in corn muffins.) He even ate a small bite of a banana muffin (bananas are tolerated by some people with FM but DS never did handle them particularly well.)
Sorry this is so long but I wanted to share what we learned because it was SO hard to figure out and of all the wonderful ideas and suggestions I found here, I don't think anyone else mentioned or talked about FM. I hope this helps someone!
Oh - and no, we didn't do a breath test. When the low fructose diet worked so well we didn't see a need to traumatize him with an infusion of the thing that we KNEW bothered him. If I knew an apple would set him off for days, I can't imagine what that test would have done.
