Strange behavioral changes-caused by removal of gluten?

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My daughter was diagnosed as celiac this summer. She has been strictly 100% gluten free for 2 months. I am starting to see some strange behavioral changes and am starting to wonder if the removal of gluten is the cause.

Last week my daughter had a meltdown. It started off as usual, extreme anger, irritability which became full blown and she was on the floor writhing, pounding her fists, screaming as usually happens. After about 10 minutes she got up, came to me and asked me to hold her. She has never, ever allowed me to touch her during a meltdown or even spoken coherently towards me, or made eye contact before. I held her and she told me not to move. She cried for about 20 minutes and then seemed to come out of it. This was the first time she has pulled herself out of a meltdown in this manner.

This weekend, she sat by herself and allowed my mother to walk away from her to take care of something. This would have never happened before, as she usually has debilitating phobia of being alone.

I am noticing she is clearer in her communication, her speech seems more fluid, less starts and stops than usual. Her thinking seems to be clearer and conversation less random.

It is too soon to say whether this is just developmental or related to the removal of gluten but it is a notable enough change to warrant a mention. I am wondering if anyone else has experienced this or something similar. Many things are unchanged but these three things are notably different.

I hope it is just the tip of the iceberg for her (and you) and that there are more improvements to come!

My memory is too vague to give specifics, but I have heard of gluten-free diets having those kinds of effects on spectrum children before.

I also have celiac disease and being gluten free improved my AS markedly.

Meltdowns and overloads are less common, and when they do happen, I am more likely to be able to pull myself out of it.
I also no longer have the amount of brain fog that I used to, which shows in my speech and in other areas that require mental clarity.
And a lot more energy.

It took about 3 months to see a pattern and about 6 to make sure that it was due to that - the easiest way to tell was that every time I got glutened or cross-containminated (CC'ed), my progress would regress back to what it used to be again for a while.

So I would pay careful attention to see if she does end up being glutened or CC'ed - obviously take steps to prevent it, but it always happens when you start the diet at least a few times - just learning curves. When she does, take careful note of her behaviour to see if it returns temporarily to what it used to be (it takes 21 days to stop reacting to gluten after you have eaten some).

Hi, Mama to Grace. I am so happy to read that you are still finding ways to help your child! From my massive amounts of research on PDD over the years, these reactions sound typical of the positive effects of a diet change!

I recently put my son (and family) on mostly organic and saw significant mood/behavior changes in my son within 1.5 weeks. I was also hesitant to link them directly to the diet so soon. After well over a month of this diet change, my son has not regressed and the positive changes have persisted.

We have not removed gluten from our son's diet as he does not have issues with it. However, I will say that a lot of spectrum kids crave carbs (mine does) for serotonin production. So maybe make sure your child has enough gluten free carbs? I know that is tough, with celiac, but maybe increase her rice intake?

Thanks Bombaloo, I hope so too.

Kjas, that is exactly the kind of correlation that I am looking for. She was glutoned by CC off the Olive Garden GF menu about a month ago I believe. She had horrible stomach ache that night but I believe the CC must have been slight and from the parmesan cheese. Prior to being diagnosed celiac, she had always had stomach aches that we thought were anxiety related. Now that she is GF, I have seen reduction in stomach aches. Her celiac was diagnosed because of DH (dermatitis hepetiformis) and positive blood test, so I expected to see skin improvement on the diet (haven't seen any skin improvement yet but was told IgA can take 2 years to get out of skin) so I didn't expect behavioral changes as I didn't think she had "typical" celiac presentation.

The meltdown change was a drastic difference. It led me to think about what else had changed.

Bjtao, we had previously been artifical flavor, dye, preservative, etc free and I did see reduction in frustration and agitation but nothing as significant as what I am seeing now.

ASDMommy, I am fearful of adding rice because of the reports of arsenic in US rice supply. I am working with GF oat flour and sorghum flours to try to fill in the carbs. I've gotten pretty good at substituting and my daughter enjoys her GF pancakes in the morning. I also was convinced my daughter did not have issues with gluten as we had previously drastically reduced gluten intake with no change. I am finding out with gluten it is all or nothing---the slightest trace of gluten is practically the same as regular amounts of gluten if their body has an autoimmune reaction as my daughter does.

They speculate that there are many, many celiacs out there undiagnosed. I wonder what the ASD/celiac correlation might be, if any? One study states that moms with autoimmune disorders such as celiac have up to 3 times greater chance of having a child with ASD.

There is a secondary indirect link to celiac disease if you have ASD. From memory, if you have ASD then you are 10 times more likely to have celiac disease than the normal population.
They currently don't know if that s simply due to genetics, enviromental factors or immune factors or some combination of the three. About 90% of celiacs are undiagnosed or misdiagnosed.

The skin can take a long time to start healing, mine took a year before it was about 50% healed and it's probably at 75% now at a year and a half.

Behaviour changes are not uncommon, as gluten does have a neurological effect. Unfortunately, it's also very addictive because of that neurological effect.

My family went gluten free 1 1/2 years ago. I heard such negative things on this forum about whether it helps ASD, but my son recognized benefits in about 2 weeks. I was told it might take 3 to 6 months for him to tell a difference. I am extremely grateful that we tried it.

Since my son has been pretty stable, it made it a lot easier to start cleaning up stuff like that. I have had many unrelated health issues over the years, so I actually started changing our family eating and other habits for myself. I first removed all soy protiens because of the estrogenic effect. I eventually learned nearly all soy is genetically modified, so I removed all types of soy (soy is in nearly all processed foods). I stopped consuming all aspartame containing products. I stopped buying products that contain HFCS. I got rid of all detergent-based products and started using soaps/shampoos that are 100% natual, organic when possible. Got rid of all paraben containg products. Got rid of all cleaning chemicals. This all led me to feeling healthy again, but I didn't see any changes in my son (or my 3 yo) until I made the change to organics. If I do buy non-organic, it is only items that don't contain any possibly GMO ingredients (soy, corn, canola, cotton, etc..) or additives. I noticed my 3 yo is not hyper anymore. I am very happy I made these changes and I never would have believed they would make such a difference in myself and kids.

Long-term I am working on getting all the plastic items out of my house (mostly food containers/tupperwear) and moving to stainless steel cookware (instead of aluminum and non-stick that we currently have) and glass. This is a slow process because it is an expensive process

Edit: I just started the 'last frontier' and quit my 20 year smoking habit three weeks ago.

Wow, congrats! Those are all great changes. I am also trying to phase all plastic out of my kitchen by 2012.