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Gluten-Free Celiac Disease Forum at Celiac.com (Home) > Celiac Disease Gluten-Free Diet Forum at Celiac.com > Gluten Intolerance and Behavior
April Walker
Hi Folks,

I just finished a thesis study on behavior linked with food and environmental issues. The study was inspired by my life with my own child.

My son has had a long battle with health issues that began with celiac disease. Food and environmental allergies, asthma, various rashes, and behavior problems. He had symptoms of ADHD, he was argumentative, his voice got high pitched whiney and loud. It was a huge battle to get him to do anything he did not want to do. School was difficult because of his behavior until we got him clean from all toxins.

Since eliminating all gluten, allergens via blood test results for IgG and IgE, these symptoms have all disappeared. Even his inhaler causes physical and behavioral issues as he is also chemically sensitive. These behaviors rear their ugly head if exposed to gluten or any of the allergens reminding us of how important it is he remain free of gluten and allergens.

My own story includes the heavy brain fog that so many have mentioned. Like others I went from not being able to learn without a huge struggle, to completing a BA and an MA in three years while working and dealing with a special needs child. After a minor surgery where I was treated with medications, I found I was so angry that I was thinking of leaving my family, leaving my job and it seemed nothing would be ok again. This lasted for about 3 days. After that I could not understand why I would have felt that way. I had a friend tell me that I was like someone else, someone she did not know. This experience as an adult helped remind me of what my son goes through with exposures.

I think what is important in all of this is getting the word out to people who are suffering. Celiac disease and gluten intolerance can cause these many symptoms. I think it unfortunate that the mental and behavioral symptoms are still so often unrecognized. A person’s life can be drastically affected with exposures and dramatically improved by elimination.

missy'smom
QUOTE (April Walker @ Jan 22 2008, 08:45 AM) *
My son has had a long battle with health issues that began with celiac disease. Food and environmental allergies, asthma, various rashes, and behavior problems. He had symptoms of ADHD, he was argumentative, his voice got high pitched whiney and loud. It was a huge battle to get him to do anything he did not want to do. School was difficult because of his behavior until we got him clean from all toxins.

It's interesting and helpful to hear other's stories. My son has an ADHD diagnosis and displays many of the things you mention. He had a negative blood test for celiac disease, but as we know that doesn't have alot of weight. He has recently tested positive for wheat among other allergies via blood test and we are scheduled for further allergy testing via skin test. It will be interesting to see what the results are and what the recommendations will be. For various reasons I haven't taken him gluten-free yet but this may be what I need to do so and it will be interesting to see how he responds.

It is unfortunate that many suffer needlessly and that mental/neurological/behavioral symptoms are not recognized. My mom has psch problems and this label is what is causing her doctor "accept her for who she is" and make no effort to further diagnose and treat her health problems even though she obviously has celiac disease and her psych problems in my opinion are exacerbated if not caused by malnutrition and all the other problems associated with celiac disease.
April Walker

My research has led me to the conclusion that blood is far superior in testing for allergens than skin tests.

Yes, behavior can be dramatically affected by food. I have a dear friend whose mother was medicated for Schizophrenia, once my friend had her diagnosis; the mother was tested and did indeed have Celiac Disease. Once off gluten, her schizophrenia went away and she is no longer on medication. I hope that is not often the case.

-April
Cinnamon
My son has an ADHD diagnosis, and I found out quite by accident that wheat was bothering him. He's had all kinds of tests, they all came back negative, including Enterolab, but when I took him off gluten, I knew by day 2 that I'd hit the nail on the head. He was a new child off gluten! Yet no one believes me. His teacher raves about the changes in him, but she doesn't believe it's dietary. She thinks she's just a super-good teacher!
celiac mum
I have the same problem my little girls behaviour changes when they try to start her on food she becomes whining and miserable her teachers have often say she loses her temper and then I always know we are having a bad day , but no believes me either , mind you if you have a belly ache and your young it must get you down causing you to get frustrated.
dbmamaz
I'm kinda waiting to see how my tests come out, but i'm really hoping the diet will help my 11 yo. He had more and more problems with behavior and finally was dx'd with (by several different ppl) aspbergers, pdd-nos, adhd, sensory integration, processing disorder, anxiety, dysthimia, and bipolar. He's now on an antidepressent and 2 antipsychotics, and has gained 1-2 lb per month since starting on these meds 2 yrs ago - but at least he was calmer and more able to function in school, right? He's had stomach problems all his life, and i've been weaning him off the dairy and I think theres a huge improvement already. The other day he went to a b-day party and had ice cream, and the next day he was mean all day, and the following day he had D - i'm so sure he'd respond well to diet. I'm just not ready to start quite yet . . . i want to have all my ducks in a row first.
April Walker
Hee hee, yes this is a common response with teachers, and when the child is not doing well, then it reverts right back to an issue with your parenting or the child needs medication or what ever it might be. I am sure they mean well, they just don't understand is all. Unless you have had Celiac Disease, or a food or environmental allergy, then you may not understand. It is not advertised, taught about in teacher training.

www.feingold.org has wonderful information and support groups for children to sensitivities to petroleum in foods and more. "Why can't my child behave" by Jane Hersey is a great book that has been very helpful, you can read parts of it on-line on the Feingold website. Also Dr. Rapp.com offers more information on environmental allergies.

I believe that Celiac disease contributes to additional food and environmental allergies. When interviewing Dr. Rapp, she spoke of hyperactivity in the Womb. I remember my son kicking and moving like no other child I had heard of, I wish I had known about things like that then.

If any of this rings a bell, check out those two websites

The main thing mom, is that you know it is true. Find support groups like ROCK for celiac disease and Feingold. Feingold has free pamphlets and information they can mail to you and there is a ton of information free on-line. Take a look at the studies linking food to behavior under research. They have information you can print and give to teachers.

Look at the child's handwriting before and after an exposure and that will speak volumes.

I know it is difficult when a teacher does not believe you, but there are more of us out there.

-April
frec
I am an elementary teacher, and I've taught for thirty years. Why would teachers believe parents talking about this issue? It isn't common knowlege--even the doctors don't believe patients when we talk about celiac/allergies/etc., and especially if it is connected to behavior.
I have the opposite problem, however. I am seeing an increasing number of children with odd behaviors and health problems. We call in specialists and run tests and have endless meetings. Sometimes the child goes on ADHD medications, but it doesn't solve things. A lot of the children are diagnosed as Aspergers. Some of them are lucky enough to get personal aides to help them. As a celiac teacher I keep thinking that maybe the child is celiac, or has other food or environmental sensitivities, but can I say that to parents? Will they listen? Will they be upset? I am not (in my district) allowed to recommend medications or mention attention deficit problems to parents--they have to come up with it themselves. Am I allowed to mention this?
I noted the resources you already mentioned and will check them out. Does anyone know others I might refer parents to?
DingoGirl
QUOTE (April Walker @ Jan 22 2008, 05:45 AM) *
My son has had a long battle with health issues that began with celiac disease. Food and environmental allergies, asthma, various rashes, and behavior problems. He had symptoms of ADHD, he was argumentative, his voice got high pitched whiney and loud. It was a huge battle to get him to do anything he did not want to do. School was difficult because of his behavior until we got him clean from all toxins.


Welcome, April. smile.gif

My gosh, you might as well have been writing about ME in that paragraph.......this is exactly my behavior - and it got so much worse. As a girl, my mom would ask me to do something - empty the dishwasher, clean my room - and I would scream and cry and it would take forever....as an adult I realized jsut how jumbling and confusing everything was - - and how difficult it was to do any task requiring order. Your boy is SO fortunate he was diagnosed young.....my dx came at 44 years of age and......lots of damage done. But - the good part is - life inside my brain has never been better. smile.gif

Congrats on your accomplishments - life without gluten will continue to improve. Am wondering if your meds after surgery contained gluten.......


QUOTE (frec @ Jan 27 2008, 02:07 PM) *
I am an elementary teacher, and I've taught for thirty years. Why would teachers believe parents talking about this issue? It isn't common knowlege--even the doctors don't believe patients when we talk about celiac/allergies/etc., and especially if it is connected to behavior.
I have the opposite problem, however. I am seeing an increasing number of children with odd behaviors and health problems. We call in specialists and run tests and have endless meetings. Sometimes the child goes on ADHD medications, but it doesn't solve things. A lot of the children are diagnosed as Aspergers. Some of them are lucky enough to get personal aides to help them. As a celiac teacher I keep thinking that maybe the child is celiac, or has other food or environmental sensitivities, but can I say that to parents? Will they listen? Will they be upset? I am not (in my district) allowed to recommend medications or mention attention deficit problems to parents--they have to come up with it themselves. Am I allowed to mention this?
I noted the resources you already mentioned and will check them out. Does anyone know others I might refer parents to?


this is a HORRIBLE epidemic in America....I have friends who teach and are facing impossible situations, every child on ineffective ADD drugs, with non-vigilant and uninformed parents who don't care much, and all the while, living on nearly complete fast food and junk food diets......and the sad thing is, not only will parents/authorities not listen to us about the dangers of their wretched diets, they can't afford to feed them properly anyway. (well - they probably could - - cutting out all the junk foods could save quite a bit of money. They just would never consider doing anything like this, or muster the discipline required to do it.)

We just have to keep getting the word out as much as possible.
April Walker
Wow, not being able to mention things for parents to check out must be really difficult. How very limiting in being able to help them. Feingold has flyers, one could be on your desk at a parent conference. I am sure that Rock for celiac children has one. If the parent picks it up, you can say they can have it if they are interested in it?

Thank you for giving us a teachers perspective. The problem is difficult for everyone, it is important that everyone work together as a team to help these children.

It is hard for any of us when people don't understand what happens to us. We really have to advocate for these children as every aspect of their development is affected. For the celiac child going on medication may cover symptoms and they may not get their actual diagnosis.

April
pricer15
My 9 y.o. son has been off wheat for 6 years and yet we continue to have these angry behavior issues. He has been skin tested for allergies but I didn't realize his behavior may be related to other food issues. Where do I go for blood testing for allergies? I don't think his allergist will do blood testing. The volcanic, lava flowing from his head, unreasonable anger episodes are what led me to remove gluten from his diet when he was litte, based on the fact that his father was diagnosed with celiac disease. He seems unable to calm himself down in the heat of the moment, even given warnings that loss of priviledges will result if he continues ranting. He is always sorry later and wants to earn them back. I was considering taking him to a child psycologist to get some tools for him to handle his anger. maybe I should consider additional allergy testing first? I'm almost afraid to hear the answer though. He already is limited in what he is willing to eat and is overweight (BMI 26).

cheryl in colorado
fedora
QUOTE (pricer15 @ Feb 16 2008, 08:57 AM) *
My 9 y.o. son has been off wheat for 6 years and yet we continue to have these angry behavior issues. He has been skin tested for allergies but I didn't realize his behavior may be related to other food issues. Where do I go for blood testing for allergies? I don't think his allergist will do blood testing. The volcanic, lava flowing from his head, unreasonable anger episodes are what led me to remove gluten from his diet when he was litte, based on the fact that his father was diagnosed with celiac disease. He seems unable to calm himself down in the heat of the moment, even given warnings that loss of priviledges will result if he continues ranting. He is always sorry later and wants to earn them back. I was considering taking him to a child psycologist to get some tools for him to handle his anger. maybe I should consider additional allergy testing first? I'm almost afraid to hear the answer though. He already is limited in what he is willing to eat and is overweight (BMI 26).

cheryl in colorado


cheryl, hi. Is your son currently off all gluten, or just wheat? I couldn't tell from your answer. I was off wheat for years, which got rid of my rashes. The gluten I ingested from other foods was still hurting me though. My daugher doesn't have digestive symptoms, but gets so mad sometimes, and upset. she doesn't grow and has mouth sores. So I am taking her off gluten. I have mood symptoms- depression and anxiety. I also can blow up in anger. No fun. Good luck. I know around her there are nutritionist that do blood testing and stool samples. I go to a kineseologist for muscle testing. I use it as a starting point. I personally, have had success with it.
April Walker
Hi Cheryl,

Sounds like my son some time ago. I tried many, many things. Finally in my thesis research Immuno Laboratories was recommended. We had all IgG and IgA blood tests ran for food and environmental done. 888.246.3676. Our doctor drew the blood and we mailed it to the lab. There may be another more local lab that runs similar tests. The information that came back was very helpful. After we removed gluten there was a huge shift in behavior and moods, yet there were still issues. He had over 20 reactive foods that we were eating regularly, eggs for example. The environmental factors were our dogs and cats. We moved them outdoors and say yet another dramatic shift. Also he is reactive to artificial colors. Everything will be going along fine and a teacher puts a glade plug in to maker her room smell pretty and wham, that angry frustrated child returns until we figure it out and remove it. Check out dr.rapp.com for environmental factors and www.feingold.org for petroleum related sensitivities and support groups. Read the information and see if anything rings a bell. I got tired of guessing, I wanted the issues to be identified and resolved. The skin scratches we did just were not accurate like blood work.

Keep doing your research. Do not give up on finding answers, and remember to breathe. Once removing the problomatic foods and enivormental factors, his grades jumped and he has been a pleasure to have in class.

April
Dennis wayne
I`m 43 and have been gluten free for 8 months and when i get cross contaminated it wreaks havoc on my psychy. I am anxiouse, irritable, depressed and prone to bouts of wanting to just cry. when I`m not contaminated i feel great my mind hasn`t worked so well in years and its hard for me to understand why i feel the way i do when i`m contaminated. so i can understand why people don`t get it. and they don`t. they think you just have an allergy or something. I believe i was close to death when i finally figured out what was wrong with me, 152.5 lbs (should be around 190-200) i looked like a concentration camp victim towards the end. the medical community treated me like a hypocondriac for years and i began to believe they were right blaming myself. but things are getting better everyday I`m up to 170 lbs. And i get to tell everyone who told me it was in my head HA! i told you so, including my ex-wife who left me when i was really starting to get sick. anyway this is my first post i seem to be rambling and apparently i`m still a little bitter.
April Walker
QUOTE (Dennis wayne @ Feb 20 2008, 01:56 AM) *
I`m 43 and have been gluten free for 8 months and when i get cross contaminated it wreaks havoc on my psychy. I am anxiouse, irritable, depressed and prone to bouts of wanting to just cry. when I`m not contaminated i feel great my mind hasn`t worked so well in years and its hard for me to understand why i feel the way i do when i`m contaminated. so i can understand why people don`t get it. and they don`t. they think you just have an allergy or something. I believe i was close to death when i finally figured out what was wrong with me, 152.5 lbs (should be around 190-200) i looked like a concentration camp victim towards the end. the medical community treated me like a hypocondriac for years and i began to believe they were right blaming myself. but things are getting better everyday I`m up to 170 lbs. And i get to tell everyone who told me it was in my head HA! i told you so, including my ex-wife who left me when i was really starting to get sick. anyway this is my first post i seem to be rambling and apparently i`m still a little bitter.

April Walker
Yes Dennis,

I can tell you it does take some time to process the suffering and blame of the victim. It is a societal pattern to do so. The real you is finally able to be alive and free of the illness that previously bound you. The real you will establish a new and better life, with people that you choose fully conscious. Illness does teach us a great deal, about others, we learn who our true friends are along the journey. It is as if you have been given a second chance in life, a chance to feel good, and to reach for your dreams.

I continue to be amazed at people who see my son now and say wow your really working with him now and it is so amazing the change. I have to bite my tongue as I have always worked with him, it is just that now we have some of the answers. You have always been who you are seeing now, you just did not have the answers to your health then.

April


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