Fructans...I'm confused

[kate]

All the FM stuff I've read says that fructans cause symptoms, yet reading through the list, none of them seem to affect my daughter. The only exception is that I thought wheat was giving her a mild rash and a puffy face but given that she's also sensitive to cows milk and soya proteins the mild wheat thing could just be a wheat thing and not related to fructans.

Going through the FODMAP diet on another post it doesn't tie in well with my daughter. As far as I can tell she has NO problems with onion, broccoli, brussell sprouts, lentils, beans, and definately CANNOT tolerate grapes or raisins which the list says are OK. Is this because she doesn't react to fructans and if she isn't reacting to fructans does that mean she doesn't have FM? Does it mean she just has a mild case of FM? Do I limit fructans or just fructose?

[FMmom]

This is one of the things at makes FM so difficult -- there isn't an absolute diet. Different things affect different people, so it's hard to gauge what is "right" and what is "wrong", especially when trying to form a diet for someone else. My daughter rarely mentions stomach pain so I assume a food works well for her, then find out that I was totally wrong. She's been in agony for weeks... Then again, those foods that change her behavior -- THAT I figure out within minutes.

The FM diet says that berries or citrus (in very small amounts) should be okay -- but blueberries are the absolute worst for Kaelin. All the things that should be kinda sorta okay for FM turn Kaelin into a little hummingbird on crack... Then I read about salicylates and found that all the things that make Kaelin forty shades of crazy are all high in salicylates.

Years ago, there was something called the Fiengold diet that claimed it could cure ADHD by eliminating salicylates. I have one daughter with ADHD and eliminating salicylates hasn't changed anything for her -- but it totally changed Kaelin. Totally.

Most of the foods your daughter is okay with are fairly low in salicylates (except broccoli). However grapes, and thus raisins, are very high. If you want to check out other foods, I found the info at: salicylatesensitivity.com/about/food-guide/

[kate]

Thanks FMmom. I checked out the salicylates site and it definately doesn't fit with Jyoti's reactions but I'd been thinking that I should look into it as a possibility so the website has really helped in letting me do that.

I've learnt the hard way today that salad cream contains fructose. I never thought to read the bottle as I got all smug making her 'safe' fishcakes. All I can say is thank goodness its bedtime and lets hope she stays down! This is all so tedious!

[kate]

Having just re-read my post above, I don't think I made myself very clear. My daughter definately reacts to fructose, but I don't think she reacts to fructans. Why would that be?

[Charlie Arnold]

Hi kate,

As far as I can work out not all are sensative to fructans, or as sensative to fructans. But I am surprised what your daughter can tolerate in that line if she has FM, I know they would set Meg off. Your problem is how to get an accurate diagnosis at her age as she is too young really to do the breath test so I guess you have to go on trial and error.

But if she is reacting generally to fructose then you are doing the right thing and keeping her off them. Do you think she has a general sugar malabsorption problem, I suppose an endoscopy and bowel biopsy is the only clear answer there but that is very invasive.

Meg doesn't seem to be much worse on wheat so I just try to limit it as best I can. She didn't like alot of the gluten free breads and many seem to contain soya which she also doesn't seem good on.

As for reading labels: my policy is, read it once in the shop, if the list is long put it back - too many chances for error. If short, read it again before buying. Then read again before cooking and serving....... tedious, but you'll be surprised how many things you do gloss over but usually on the third read you spot it....... Having said that nearly slipped up with ham from Tesco, had a really good offer on some proper ham so I brought it, then found sugar in it when I got home (and Meg seems no good with that).

[kate]

Thanks Charlie, that's really helpful. I'm not sure about the sugar malabsorption problem as I've never heard of that but I think I'll avoid google-ing it at the mo as my brain is frazzled by the steep learning curve involved in all this already!

What I find confusing is that she can have a really significant and reproducible reaction to 2 slices of honey roast ham or a single squirt of salad cream in a batch of fishcakes and yet she seems to tolerate fructans absolutely fine. She reacted to wheat when first weaned but after eliminating it for a month and then reintroducing at the advice of the dietician she tolerated it fine.

Like you said, trial and error seems to be the way we're needing to go. Currently I have a happy, content and burnt-bottom free toddler for the first time and we're getting good at spotting even mild reactions. I guess I should count my blessings that she isn't reacting to fructans and just persevere with the detailed food diary.....