Gluten free making behavior problems WORSE? - Mothering Forums
Allergies > Gluten free making behavior problems WORSE?
jolie-fleur's Avatar jolie-fleur 01:37 PM 06-01-2009
We're doing a three month gluten free trial at our home. DS1 has some behavioral problems (not diagnosed) that seem autistic/ADHD in nature. He is very sensitive to casein, MSG, and food dyes and preservatives and those have been eliminated for a long time. So far, eliminating gluten has produced MUCH WORSE behavior. A regression, even, from the progress that we've been having throughout the school year!

FWIW he does not have seem to have any GI irregularities and has excellent general health (despite the fact that he has Type 1 Diabetes!) while regularly eating gluten. He did just have a massive ear infection (fevers over 104 for 5 days, very large ketones) that we finally treated with a very strong antibiotic (fought it naturally for two months!) that could also be a factor.

I know that in the past he has shown sensitivity to corn and doing the gluten free thing we've been consuming more corn. Perhaps that is the reason for the regression?

Has anyone ever done gluten-free and seen WORSE symptoms? We regularly eliminate foods and the answer seems so obvious. In this case, I see no improvement whatever without gluten, nor did I see impairment WITH gluten. I do plan on continuing our three month trial but I must say I am discouraged.


Village Mama's Avatar Village Mama 01:49 PM 06-01-2009
Regularly we have seen a major regression when cutting out offending foods. In our case we have seen behaviors like agression,irritibility, many more melt downs, more stimming, bed wetting, nightmares and the list goes on! I always think of it like a withdrawl period as it is much like drug withdrawl. I am a little sleepy so I apologise if you posted how long you have been trying this... how long has it been? We were still experiencing worse behavior for about a month. A great thing to do will be to write things all down, including the little good steps you see... we had things like eating more, a change in drawing and art and better sleep. Sometimes these will happen so gradually that it is harder to notice. I have looked back and seen a month later that our lives have changed a ton. It may be beter motivation if you can see the little good things written down... cause the withdrawl period can be awful! There is light at the end of the tunnel!
jolie-fleur's Avatar jolie-fleur 01:56 PM 06-01-2009
Thanks, Villagemama. I think we've been at this for about six weeks. Although, honestly, we made some mistakes at the beginning so I'm not sure how long we've been TRULY gluten-free. All the books say three months to really see improvement so I'm going to hold out for at least that. Really, I picked this time frame because summer is upon us and much less structure/school/opportunities to eat socially so we can really focus on diet.
clicksab's Avatar clicksab 01:57 PM 06-01-2009
We are considering going GFCF for the same reasons and the book I'm reading right now is telling me to expect regression at first. It's basically withdrawl. How long have you been gf?
crunchy_mama's Avatar crunchy_mama 02:01 PM 06-01-2009
Yep- we had bad regression for the first few weeks especially and it took a bit after that before we saw good improvement- at least in the mental/behavioral aspect. The diarrhea stopped pretty shortly afterward and the vomitting- if I remember correctly.
kjbrown92's Avatar kjbrown92 02:08 PM 06-01-2009
We only had withdrawal symptoms for 3 days. If you think there was an issue with corn, and you're eating a lot of it now though, that certainly could be the problem. Has he been checked for celiac? My friend's 2 boys, also type 1 diabetes, were checked for celiac by their endo (he checks all the type 1s for it, because it's carried on the same gene) and had it, even though they'd had no digestive symptoms. Just a thought (though once you are off it, the blood test is no longer accurate). Not that you need a "diagnosis" to prove it. I just didn't know if you'd already checked into that, but are also checking out an intolerance, since they're different. Are you keeping a food journal?
jolie-fleur's Avatar jolie-fleur 02:24 PM 06-01-2009
We're off corn now (about one week) with no major behavioral improvement. GI tract was pretty messed up from the antibiotic so I'm going to push probiotics and see if behavior improves.

It has been way longer than three weeks and behavior is still really bad. DS is eating way less, has become uber picky about every little thing--not just the gluten-free substitute foods but all the sudden he's picky about peanut butter, and hot dogs (nitrate free) and every thing else!

Unfortunately, it is making school life miserable. He only has two weeks left and it was his first year. I SOOO wanted it to be good closure for him.
tanyalynn's Avatar tanyalynn 02:33 PM 06-01-2009
My son and I don't have digestive problems, he has/had some sensory-seeking behaviors that are related to our health issues, and for him it took 3 months _and_ a long list of supplements to see a change with gluten free. I felt better in a day and a half.

Even in my son, whose symptoms have always been quite mild, never enough for a diagnosis (my health deteriorating is what started us looking into health matters), I've seen behavioral issues with stomach bugs. I'm sorry you're having such a rough go of what would seem to be an otherwise straightforward food elimination trial.

With the issue of Type 1, it seems really good to look at gluten. Instead of a blood test, you could do stool testing through Enterolab, they can look for antibodies in the stool, I think up to 2 years? or is it 1 year? after gluten removal. They've got a separate gene test for celiac genes as well, it's not an official diagnosis, but it seems like useful information.
Mrsboyko's Avatar Mrsboyko 02:41 PM 06-01-2009
Originally Posted by jolie-fleur View Post
It has been way longer than three weeks and behavior is still really bad. DS is eating way less, has become uber picky about every little thing--not just the gluten-free substitute foods but all the sudden he's picky about peanut butter, and hot dogs (nitrate free) and every thing else!
When we did a GF trial DD was just plain HUNGRY all the time. Her behavior was also awful I really thing she was just so darn hungry and we just didn't realize it. She was just under 2 y/o at the time so she really couldn't communicate well enough. If he is being so picky he probably is hungry too. Not sure how to solve that issue, but knowledge is half the battle, right?
Chinese Pistache's Avatar Chinese Pistache 02:48 PM 06-01-2009
I'd stick with corn-free for a while longer and see how it goes. Corn def. affects my dd (she has an IgE allergy to it), both physically and behaviorally. The other thing I'd throw out there is maybe he's having blood sugar issues? Is he getting enough to eat now, particularly from carbs?
jolie-fleur's Avatar jolie-fleur 02:59 PM 06-01-2009
He's definitely having blood sugar issues GALORE so that could be a factor for sure. So frustrating. We're working closely with an endo that I trust and we're "model patients" according all medical personnel--type 1 is just tricky!

I'm not sure where to budge on the diet thing. I don't want to add back corn, MSG, dairy, or preservatives. We try to moderate our cravings. Glutino pretzels are fairly inoffensive but wreak havoc on blood sugars. Maybe I should just find the gluten-free things he likes and just serve them at every meal to make sure he gets enough to eat?

Yes, I think I'll do that. Of course, if he craves it it makes me think that he must have an intolerance...


Oh! And he has recently starting "winking" from his right eye. Does that seem like a nutritional deficiency? It seems kind of like a tick but this one is new? Any tips?

tanyalynn's Avatar tanyalynn 03:02 PM 06-01-2009
I had an intermittent eye tic a few years ago, not really severe but I found it annoying, I think it was magnesium related (deficiency) for me.
mamafish9's Avatar mamafish9 03:13 PM 06-01-2009
I just wanted to put out there that it's possible he doesn't have gluten issues, too. One thing that I think about a lot is that there is a cost to these elimination diets. For example, getting my ASD DS to eat any foods has been a big challenge, and we were making really nice progress. The elimination diet has caused major setbacks in that progress, which could have long term impacts on his nutrition and happiness. It's also making food allergies a focus of our summer, which isn't my favorite consequence! We're sticking with it, because we're seeing progress, but I think it's OK as parents to decide that "this" isn't it for our kids, or this is not the best time to figure it out.

Could you do an IgG blood test for gluten intolerance? Not always accurate, but at least if it gave you a yes or no, it might help you know which way to lean on this?
p1gg1e's Avatar p1gg1e 05:08 PM 06-01-2009
Lentils are great fillers for being gluten free.

Could it be a common ingredient in the gluten free foods that are bothering him?

What about the anti biotic he is on or was on. What were the ingredients in that?
dannic's Avatar dannic 07:08 PM 06-01-2009
Both The Mood Cure and Healing the Childhood Epidemics discuss withdrawal...and we've exerienced it with both dd and myself...if it is dithdrawal, it will get better! Hang in there!