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View Full Version : Has anyone tried GFCF with no luck?



JTsMom
03-28-2011, 06:43 PM
We're approaching the 3 month GF mark, about 6 months CF, and not seeing any improvement. I've about had it. All it seems to be doing is draining my already abused wallet and limited time. I feel like all I ever do is shop for, prepare and clean up meals. I hate not ever being able to pick up something quick that J will actually eat. If we were noticing any type of behavior change I'd be shouting it from the rooftops, but this just seems to be adding unnecessary stress to an already stressful situation.

Our we the only GFCF dropouts? At what point did you call you it a failure?

firsttimemama
03-28-2011, 08:57 PM
Hi,

I'm sorry you're feeling discouraged. I have seen improvement with GFCF but I have a friend who stopped after a 90 day trial. Have you seen any changes at all, or some changes but not what mattered to you (like behavioral)? My friend wanted to see specific changes in her boys that did not happen, so she stopped. Are you working with a DAN! dr? My thought would be that maybe there is a coexisting issue that needs to be addressed (yeast, etc), OR maybe another diet would work better (specific carbohydrate, GAPS, etc etc).

Good luck and *hugs*
We can't ever figure out what works without trying it. With as many treatments as are publicized for autism these days, it's maddening figuring it all out sometimes.

L

JTsMom
03-29-2011, 08:41 AM
No changes at all. We have occasional good days, but we've always had those. He didn't seem to have any gut issues before we started, so I didn't really have a ton of faith that it would work, but I figured it was at least worth a real try.

I was really hoping it would help with behavior issues, impulse control and his temper, but there has definitely been no improvement in any of those areas.

We haven't seen a DAN! Dr. DS's official dx are ADHD, SPD and various language and dev. delays, but he's very spectrum-y in general. I'm in the process of switching from our "everything is normal all the time" ped, to one who specializes in special needs and has a passion for dietary intervention, so we'll see what she has to say about trying something else.

I'm thinking that CBT is going to be the next course of action for us. I'm running out of ideas.

snowbunnies300
03-29-2011, 09:13 AM
We saw no change after 9 + months of GFCF diet. We did notice that when we went back to milk with DS1 he had BM problems. He can have "incidental" milk ~ cheese or foods prepared with milk products but if he drinks a glass of milk a day he has bathroom problems.

I did not do any allergy testing as I was told that it isn't always accurate and the best way to go is to remove the food and see what happens. Did you do testing?

I know that there are people who swear by the diet. It didn't work for us. It is an expensive and time consuming endeavor. I didn't have many pre-made products so I made most of their food from scratch and had to drive to specialty stores to purchase the GFCF products. I so understand the frustration. We quit the diet and I have no remorse about it. It was the right thing to do for our family (and wallet).

I do try to get a probiotic in DS daily as it seems to help him to have a BM daily (something he had prior to the diet but after the diet he began holding).

egoldber
03-29-2011, 09:18 AM
I think the best way to know is to gradually reintroduce foods and see if you see a worsening. That may help you figure things out. So if it were me, I would pick the food that is hardest for you to manage and reintroduce it and see what happens.

JTsMom
03-29-2011, 10:47 AM
We did do a basic blood screening for the most common allergens (not b/c of the diet, it's just something his dev. ped rec'd as a matter of course). He came back very slightly elevated for dairy, soy and pork, but we're talking by 1-3 points kind of thing. He's never had any type of bowel issues at all, luckily. He does occasionally get red cheeks, which I know can be one sign of a dairy allergy, but he still gets those, so I don't think that's it. He used to consume a ton of dairy, so I would think if he were truly allergic, he'd likely be showing more signs.

We don't eat a ton of soy. We try not to eat a whole lot of processed stuff, but of course, it's in almost everything, so he does get some. The only pork he eats is a very occasional piece of bacon.

Dairy hasn't been that bad to give up b/c there are so many subs, and b/c DS2 is allergic to dairy, so I had to give it up as well (nursing). Wheat is a bit tougher. He's a pretty picky eater, so eating out is almost impossible now. He'll eat a lot of the bread subs, but isn't thrilled with them. I bake his bread from a GFCF mix, b/c that seems to give us the best quality product, but of course, that sucks up even more of the time I don't have.

We live out in the boonies, so trying to find products is a real pain. Whole Foods and TJ's are about an hour away, so when I run out of something between trips, I'm in trouble. That's true for the dairy stuff too though, and there's no avoiding that for me.

You know, imo, it's not the worst hassle in the world or anything, and if we were seeing any type of results from it, I'd be 110% on board, but I don't want to kill myself for nothing. I just wonder if 3 months is long enough to say we've given it a fair shot. I've read that some people say it can take up to a year, but that seems extreme to me. This poor kid already has so much going against him that I hate to put him through more if I don't need to.

JTsMom
03-29-2011, 10:50 AM
I think the best way to know is to gradually reintroduce foods and see if you see a worsening. That may help you figure things out. So if it were me, I would pick the food that is hardest for you to manage and reintroduce it and see what happens.

This is probably how I would do it, but I'm kind of afraid that the new ped will say we should have done X or Y, and I'll kick myself for giving it up. His 6 yr well check is coming up in May.