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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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RyanIN

Instant Behavior Change In Son After Going Gluten Free.

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My wife and I recently decided to have our whole family go gluten free. I'd been gluten free for quite some time now, but we'd wondered if doing this for our son might help with some of his behaviors. He is not diagnosed with any autism spectrum disorder. He is profoundly gifted (he took a community college math course at age 7) and so we are never sure what part of his behaviors are from being so extremely gifted and what might be some form of aspergers. Nevertheless, we thought we would try the gluten free diet (as we are already vegan - so we'd long since given up dairy). Within 24 hours, we already noticed major changes. And this was a kid who would have mega-meltdowns on a daily basis. He would be so easily set off into an explosion of anger and frustration and was unable to be calmed. It was truly a stressful nightmare at times. Yet, 2 weeks into our gluten free trial and he has yet to have a single explosion. A few times we saw what used to be the signs that an explosion was coming and then he'd calm down and be fine. My wife and I are nearly in shock. So, we are wondering if anyone else has had this experience with giving up gluten for a child? Can it really work so quickly and powerfully? And if so, does anyone know why? I know it has helped my interms of my gastrointestinal issues and allergies, but this just seems even more miraculous (especially considering how quickly it happened). I'd love to hear about other people's experiences related to behavior changes from giving up gluten.

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The gluten free diet really calmed my son down. He was a 3 year old toddler at the time, so meltdowns were expected at that age. He is now thirteen and although he was never diagnosed (his younger sister was and that made it a gluten free household) he vomits when he has had accidental gluten. My daughter was so young (and sick) it was like an after thought wondering why there wasn't any more temper tantrums?

In some individuals gluten has an opiate affect. Some individuals have a "withdrawal" period. :huh: (Some autistic children have banged their heads against objects for a week in some cases of withdrwal.)

I am very glad your family has found gluten free living as a positive change. There is no reason to ever doubt that such a drastic change has occured just because there was no medical test preformed. :)

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I noticed a great difference in my oldest son (10), who is also rather bright and has mild aspergers. Before going gluten-free he would get overwhelmed much more easily. If we had more than a couple of people over we could almost count on a meltdown, but now he handles the noise and people very well (although he will still often disappear for a few minutes to regroup).

He is generally much happier and his moods are on more of an even keel. The "serious little professor" nick name described him to a tee, he was almost melancholy before... the type of kid who had his first smile at 4 months old. Now he jokes and plays (he didn't really play before) and laughs a lot. It's beautiful.

His concetration in his school work (in the subjects that don't interest him) has improved greatly too. Since we homeschool, this is a huge relief for me.

Physically, it helped his stomach and headaches to go away. He has put on some weight, and is growing again too (he was dropping down the height chart over the last few years from 80+ percentile to below 50th percentile, so his 8 year old brother is now taller than he is).

It also took making him casein free to get to this point. going gluten-free helped a LOT, but casein free made a big difference too. it might be something to consider since going gluten-free made such a difference, and because you suspect Aspergers in your son.

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My son is autistic. We transitioned VERY slowly to gluten free which made it easier for us but I suspect that's why we didn't see any significant behavior changes. But every time we try to add it back, we see huge changes in behavior. Meltdowns (which is actually not common for him), "spacy", hyper, and emotional. We even did a test once where we didn't tell his teacher. She wrote me a long e-mail telling me she had never seen him like this and asking what was going on. Having that independent confirmation told me that gluten really does affect him.

We'd actually like to be able to add occasional gluten back in. He's 4 now so he doesn't really pick up on it yet that his diet is "different." Since we're pretty sure he's not celiac (doesn't seem to have a problem with cross contamination and we've been able to do very minimal gluten without seeing any effects), I'd love for him to be able to have the occasional "cheat" with his friends.

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I wish there was more research out there on this topic.  It just seems too unlikely that these changes in his behavior could just have happened at the exact moment we made this change.

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Don't over-analyze it or worry about it.  Just be happy :)   Sounds like a great unexpected outcome.

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I wish there was more research out there on this topic.  It just seems too unlikely that these changes in his behavior could just have happened at the exact moment we made this change.

If you look into research on diet and autism, and in books on treating autism, you will find more info there. :)

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I have two boys gluten free. My youngest (age 3) would have terrible meltdowns with no control of his emotions - he didn't know why he was so frustrated. Everyone said it was because he couldn't talk yet so he can't communicate what he has to say. He was also quite pigeon toed. He slips under the radar for autism and is growing well (he did have loose stools all the time and was told he is fine and not to worry by his Ped). I did worry and my nutritionist suggested an alternative doctor. He has been gluten free for six months now and there are rarely any outbursts anymore and his walk is normal.  We cheated over Halloween and that led to meltdowns and stumbling with is right food turned in dramatically which is now back to normal - no more cheating for us!

My oldest son has had joint pains all his life (which also got dismissed at growing pains as there was no inflammation), he has pilaris keratosis (which is "normal" as per the GP - mine cleared going gluten free), and in the past two months he was sinking deeper and deeper into depression and developed rapid blinking/twitching in his eyes. Finding out how bad he feels about himself I took him off gluten (two weeks now) and the eye twitch is almost gone and he is interacting and seems very happy. I can't believe how quick the turnaround was. He felt something was wrong and wants to stay gluten free.

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A drastic change in behavior is what led us to the doctor in the first place.  My then 5 year old suddenly went from being a "typical" boy (no angel) to having terrible melt downs over seemingly insignificant things (wrong toy in happy meal, legos didn't fit together, socks were too hard to put on . . .)  He was angry all the time and his tantrums included kicking, hitting, throwing things, and banging his head against the wall.  Nothing seemed to help, no consequences seemed to matter.   This went on for about a month.  We got to the point where his behavior was so unpredictable, we just didn't go anywhere.  Amazingly, he was keeping it together in school.

 

Then, out of the blue, he started to complain of a stomach ache.  After 3 or 4 days, I made an appointment to take him to the doctor.  By the time we got in, the complaints had stopped, but not the bad behavior.  I mentioned the behavior problem to the doctor (just in conversation, I didn't really think of it as a symptom) and she was brilliant enough to think to test him for celiac.

 

As soon as we were able to go gluten free (took a few more weeks to finish all the tests) we had our happy, friendly, outgoing son back within days.  It was like a miracle.  Our doctor said BEHAVIOR is the number 1 symptom in children . . . far more common than GI issues.

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Celiac runs in my husband's family.  With our son, who was diagnosed early (right around 13-14 months) his behavior was clearly indicative of pain (inconsolable, coudn't get comfortable, waking up in the middle of the night crying in pain); however, my sister in law has a child with autism and celiac.  Her experience was that her son's behavior wasn't obviously pain-related, but his motor coordination, speech and ability to socialize dramatically improved on a gluten free and dairy free diet. 

 

She isn't as picky as me about keeping seperate utensils and other cross contamination issues and I don't think her son's reactions to being accidentally glutened are as dramatic as we see in our son. 

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The answer is yes....it can! I didn't believe it 9 months ago, but it's the truth. It totally happened to us. Our daughter was different immediately. I am thinking out kiddo had the neurological form. Which is why for us it was so immediate. I know it seems impossible but really it, it's totally possible that it can be such a change. I would say expect good days and bad days. But your new normal will be awesome!

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The answer is yes....it can! I didn't believe it 9 months ago, but it's the truth. It totally happened to us. Our daughter was different immediately. I am thinking out kiddo had the neurological form. Which is why for us it was so immediate. I know it seems impossible but really it, it's totally possible that it can be such a change. I would say expect good days and bad days. But your new normal will be awesome!

Thank you. My daughter is 2.5 ad is getting tested Monday. She has been constipated since the day we brought her home. Had unconsolable crying for first nine months, and since 9 months easily upset, moody, unpredictable. I'm hoping we an pin point why, and reading these posts on gluten free diets gives me hope that her days will be brighter for her.

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Hi, I just Google this topic and saw your post. My son just turned 5 & for the last couple of years has these births of anger and frustration, it can also go on all day & there's no calming him. 

He's starting school soon & I was so upset at new years wondering what I was going to Do, he can't go to school acting like this - so I thought I'll give anything a go. I took him off gluten & notice a change within 24 hrs!! I can't believe it! He's much calmer & if he has an outburst it's reasonably quick. Amazing! 

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20 minutes ago, Cheriel36 said:

Hi, I just Google this topic and saw your post. My son just turned 5 & for the last couple of years has these births of anger and frustration, it can also go on all day & there's no calming him. 

He's starting school soon & I was so upset at new years wondering what I was going to Do, he can't go to school acting like this - so I thought I'll give anything a go. I took him off gluten & notice a change within 24 hrs!! I can't believe it! He's much calmer & if he has an outburst it's reasonably quick. Amazing! 

This is a old post from 2013, you might want to put your son back on gluten and do what we refer to as a gluten challenge, and get tested for celiac disease. This might seem odd but you can actually get school plans, and help if your son is medically dianosed with this disease. Even if he does not have celiac there is such a thing as NCGS (Non Celiac Gluten Sensitivity), and he might just have to avoid it regardless...heck gluten used to turn me into Mr.Hyde, all rage, scream, punch walls.....it was causing gluten ataxia and my own immune system was attacking my nervous system causing confusion and anger....this also led to brain and nerve damage.

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/

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