[NiteNicole]

I know gluten is blamed for just about anything you can think of now, but I'm wondering if going gluten-free is something we should try for my daughter. It would be a HUGE change for her. She does not like change and she does like food. So many things have changed for her in the past few years and it has been difficult.

Some back ground - I had a very long thread almost two years ago where I talked about her doing this thing where she'd refused to walk when we tried to make her go faster. We thought it was behavioral and now we think (well, we suspect) it's neurological. She's been on medication for about 18 months - sometimes things are really good, you'd never know there's an issue except she can't run. Then some days are like today and she's using a walker.

I don't consult Dr. Google because there's just too much scary stuff out there, but even in my heavily filtered little world I'm seeing information on gluten and neurological issues. Not a single doctor has ever suggested it to us and I can't find a lot of really concrete science.

She's also had other random things over the years that didn't really add up or make sense. She's gotten really bad red patches on her skin for months at a time, she's ALWAYS been moody and prone to tears and even now at five, she can not manage her emotions and is sometimes just totally overwhelmed. She didn't sleep through the night till she was over three years old. She gets tired easily. She doesn't eat a lot but she's still overweight (not hugely, but for her age and certainly in comparison to what she eats). She has various seasonal allergies and has a huge problem with ear infections.

From what I understand, gluten free is not something you can do half way or just kinda, it's either totally gluten free or don't bother. It would be really hard to keep my parents from sneaking her things. She goes to church and Bible school. She starts school in the fall. I am trying to imagine myself TOTALLY committing to this and never ever caving to other people who want to "treat" her - if I KNEW this would make a difference, it would be no problem. But doing it and not really knowing (because her symptoms fluctuate so much anyway)...it sounds like a HUGE upheaval in her life.

How did you decide to commit to diet changes and do you really think they make a difference?

 

[buttercup]

You might consider asking the Peds to get IG tests for gluten, dairy, eggs and other common food allergies. It is a blood test and it is used to determine if people have an allergy to foods. But you can also use it as a guide to determine of any potential food sensitivities instead of allergies.

My kids have autism and we decided to doe the gluten-free, dairy free diet. It was challenging and we removed the offending foods gradually over a period of 3 months. It wasn't because our children struggled with the diet, but because my husband and I were learning about it and trying to find alternatives. Pizza was the most difficult. We simply removed it from the family diet for 3 months. When we reintroduced the gluten free, dairy free version, the kids were excited and gobbled it up for they could not remember the original flavor. Now a days, there is so many more choices with regards to gluten free. Even though my kids are off the diet, we still eat mostly gluten free for it has become a part of our daily life.

I know that these websites are specific to autism, but they have great info on going gluten free:

http://www.gfcfdiet.com/

http://www.autism.com/faq_diets.asp

http://www.autism.com/pro_categories.asp?con=Long%20Beach&Year=2010

One other thing you might look into is probiotics and candida overgrowth.

 

[NiteNicole]

Thanks for the info! When I start looking, there is just SO MUCH. She was on a probiotic for months this year because of ear infection and taking antibiotics. We ran out around the time she went of the abx and I just stopped buying it.

She will need bloodwork soon because of her meds, that would be a good time for us to go ahead and check into allergy testing.

I am just so conflicted about doing something that turns our life upside down - if there's no real reason to do it. She already struggles, she's already different from other kids and she's becoming more aware of that. To load this on top without some pretty convincing evidence - I just don't know if I can. I've read a few forums were a hand full of people say that going gluten free made a huge difference in their dystonia after a year but the thing is, dystonia can CHANGE in a year. Maybe it was the gluten, maybe it wasn't. Not that I doubt their experience, but my child is already struggling. To make her life more complicated without KNOWING there's a real chance of it making something BETTER is just...I'm not sure we're ready. And then I have to convince my husband.

Thanks for the links!

 

[karne]

I have friends who absolutely swear by a gluten and dairy free diet. Most of the folks I know do both. I considered it for many of the same reasons you are--I was reading, researching, lots of anecdotal evidence about how life changing the diet was. I taled to my pedi, who is extrmely supportive of alternative therapies, etc., and the opinion was that it most likely, for my kids, would not really make a difference. I thought a lot about the reality of fitting in this type of diet into my family's life, and in the end have chosen not to do it.

As my kids mature I see many of the changes that theoretically diet would have worked on, happening just in the process of maturation. I have chosen to keep dairy because we drink raw, grass fed, high fat milk, which is worth it's weight in gold for my kids. I tend toward a nutritionally solid, traditional foods inspired diet as well. We avoid as much processed food as we can, and food dyes are out. We're also human-my kids love some junky foods, and I occ. have them around.

I think that there are other folks on this board who have had really positive changes with diet, so hopefully you'll get that perspective. I just wanted to offer what my process was, and what's currently working for us. I'm sure there are many, many things I could look at changing, but in the end I'm working with what feels within my ability to do, and not make my kids and family nuts. I also have slightly older kids, and esp. w/a preteen it's tougher to maintain a very strict diet.

Good luck!

 

[NiteNicole]

Thanks for your perspective.

I am so torn - I would do ANYTHING to make her life easier and happier but I don't want to instigate such a major change and make things harder for no good reason.

 

[laohaire]

Just a few random thoughts:

1) Even if it's true that it's all-or-nothing, if you think it would be easier, you could still do this in steps. Start by JUST tossing the breakfast cereal (for example). Figure out alternative good breakfasts (eggs, bacon, fruit and cheese, fruit and peanut butter - my fave is bananas and peanut butter). After a while it will be standard. Then toss the pasta. Etc. It would take longer but might reduce the stress of it.

2) Personally, I go through a period of thinking before I do something, so I recognize where you are. I thought for weeks before going grain free myself. I thought for weeks more before making changes to DD's diet. Just wanted you to know that.

3) You can try gluten-free products as a crutch for a while, too. I actually don't think they are good foods - heavily processed, probably high glycemic, etc. But maybe they'll help you guys. Personally we didn't bother, but it's just an idea.

 

[Linda on the move]

Quote:

Originally Posted by karne

I have friends who absolutely swear by a gluten and dairy free diet. Most of the folks I know do both. I considered it for many of the same reasons you are--I was reading, researching, lots of anecdotal evidence about how life changing the diet was.

...I'm sure there are many, many things I could look at changing, but in the end I'm working with what feels within my ability to do, and not make my kids and family nuts. I also have slightly older kids, and esp. w/a preteen it's tougher to maintain a very strict diet.

yeah, this is kinda where we are too. I briefly tried going gluten and diary free with my DD, and it didn't go well. She has tons of sensory issues around food, so getting her to eat new things was horrid. She was EXTREMELY unhappy, and we didn't see any positive changes at all. Nothing. It was a whole bunch of work with no pay off, so we quit.

The thing about trying something new is that if it doesn't work, you don't have to keep at it. But if you don't try, you'll never know.

I wouldn't go in totally committed. I'd decide how long the experiment is, keep careful notes about how it goes, see if you see improvement, and may be even make a commitment to NOT sticking with it when the experiment is over and once again seeing what happens.

For some people, the difference makes it worth the effort. For some people, it doesn't. Right now, you don't know which camp you are in.

My kids have a 12 year old friend who is gluten free and very happy to be gluten free. She remembers how she felt when she ate gluten. I think that for kids who this really makes a difference, they can adjust. No kid wants to feel crappy all the time. (She does fine with diary)

 

[NiteNicole]

I forgot to add, she's also on meds that involve some kind of convoluted dosing and food complications. It's a long story but basically she takes two meds twice a day (four meds in allergy seasons). One has to be given on an empty stomach two hours after and one hour before eating, the other must be given with food. IDEALLY they'd each be taken twelve hours away from the last does (so she takes med A and then takes it again 12 hours later) which is impossible, the child has to sleep. She also may have some low blood sugar issues. One of her meds can not be taken with protein but it's the one ideally taken on an empty stomach.

The thing with going gluten free is that apparently it must be 100% or it's not worth it. Scaling back a little at a time would seem to drag out the misery without yielding results. I did read where one woman said after a year, she was free of her dystonia symptoms and has been able to add back in gluten slowly with no ill effects. I just don't know.

We are seeing a new neuro soon and I hope to run this past her, but so far only our ped has been really supportive of things like this. Our current nuro isn't rude about it, but he seems to think that it's meds or nothing.

lohaire, you mentioned high glycemic and heavily processed gluten free foods - I think those would have to be very rare. She sometimes seems to have blood sugar issues but she CAN NOT have a diet "high" in protein because of one of her meds. I try to avoid artificial colors and sweeteners AND limit sugar at home and when *I* am making the choices, but I try not to make a big deal of it when she's eating at a friend's house or we're out with a group. I simply don't feel like fighting. I am ESPECIALLY worried about artificial colors and sweeteners because her issue is neurological. Obviously I don't want her to have a lot of sugar. If I rule out dairy, soy, gluten...eventually I'll have her down to water and ice cubes, you know? I feel like...where does it end? And will it make a difference?

Thanks for understanding the "thinking it over" phase. I will probably research and talk this over for a WHILE before deciding if it's for us, but I'm glad to have someone to bounce it around with me.

Thanks for all the advice and thoughts, everyone. I'm open to hearing it all!

 

[laohaire]

I'm an "all or nothing" person myself - but I do recognize that some people would rather scale back than go cold turkey.

When we went cold turkey (and that's what we did) there was a period where we relied on the same foods over and over again. Just a few foods that worked. That did improve over time. I also had to make (and keep re-making) lists of potential snacks and meals because I'd draw a blank all the time.

We bought a menu mailer from www.cookingtf.com, and that helped a lot. The author is GFCF, and while her mailer includes optional grains and dairy (like a meal might have a suggestion of serving on tortillas and/or with sour cream) it's all optional.

For us, it really was a paradigm shift. Grains and dairy are surely the very staples of the American diet. (We are not dairy free now, but I'm considering it).

Also, for me, going grain free yielded INSTANT results. The first 24 hours, nothing, but the second 24 hours were major, and now my body is clearly changed (no blood sugar swings, excess weight has come off, more stable energy).

For DD, I did not notice instant results. But I do believe I see results. If nothing else, DD's eating is less disordered. Even if her weight gain (which so far is only a very mild weight gain, but I AM happy!) might have happened anyways, I am absolutely positive that the change has been the reason she can now be a lot more flexible eating (such as at other people's houses and such). Feeding her was a nightmare before. Now it's more of a "mild effort" lol. And there is absolutely no doubt in my mind that the quality of her food intake has increased - rather than cereal, pasta, cereal, bread, cereal, she has added many vegetables and meats to her repertoire (fruits were already well-liked). The day DD looked at my bowl of salad and wanted her own bowl - and then she wanted one for a bedtime snack, and then for breakfast the next morning - well, I never thought I'd see that day. And I do believe it's' related to the grain thing because these changes all happened within a couple of months, after YEARS of the same patterns. I can't prove it, but I believe it.

I do not think DD and I have celiac disease (but who knows - and maybe we were headed in that direction, though). I don't think wheat is inherently bad, yet there's something wrong, I think. Either something about the wheat has changed in the last 50-100 years. Or the sheer amount we consume in our diet has changed. Or just the very poor quality of the foods that tend to contain wheat has affected us. I don't know. I saw recently that someone analyzed blood samples from the '50s and found that the markers for celiac were rare (or nonexistent, maybe) in the samples, suggesting that celiac and wheat/gluten intolerance are actually on the rise and not merely better- (or over-) diagnosed.

Anyway, due to my experience, I think it's very worthwhile to give it a try. I'm not sure if I expressed well enough that having DD go wheat free was a BIG deal because her eating was so disordered. So, coming from someone who thought it might be "impossible" to do, I felt it was worth it. And while it was not easy-peasy, it wasn't actually as hard as I thought it would be. And DD did not lose any weight in the process, though for a while it was definitely harder for us to get her to eat enough in a day. We were very concerned about that since she is so low weight (3rd or even 1st percentile).

 

[Linda on the move]

As far as processed gluten free foods, I would think cake mix would fall into this category. It might not be an every week item, but it is nice that a gluten free child can still have chocolate cake on their birthday

 

[karne]

Quote:

Originally Posted by laohaire

Either something about the wheat has changed in the last 50-100 years.

I don't know the answer to this, but I recall hearing something recently about the amount of gluten (I think that's what it was) in American wheat versus wheat that might be grown in Europe. I thought it was interesting at the time, but can't remember specifics now.