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    Do you have questions about celiac disease or the gluten-free diet?

Guest April Walker

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Guest 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

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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.

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Guest 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

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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!

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Guest 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.

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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.

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Guest 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

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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?

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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. :)

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. :)

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

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.

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Guest 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

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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

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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.

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Guest 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

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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.

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Guest April Walker
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.

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Guest 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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My son was on adhd drugs until his seizure right after Christmas. Did eeg & allergy testing and he's allergic to gluten/gladin, dairy, eggs, peanuts and beef.

He has improved some but he is very defiant and we think that's because he's limited on his diet and he feels like he's lost control. Still new to this only a month and a half but he's off meds and still doing alright, struggling a bit in school and socially.

Just nice to hear i'm not the only one....

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My "Aspie" son was on the gluten-free diet for a year... with absolutely NO benefits at all. His doctors all agreed to allow gluten since we saw no benefit, and his diet is extremely self limited due to sensory issues.

On the other hand.... my daughter, who is dairy, egg, nut, soy, gluten free still has behavioral "differences" and our team of doctors are already saying she's probably an "Aspie" as well. It's inherited... as my husband also has Aspergers. I don't know what else I could possibly take out of my daughter's diet to help improve her behavioral issues.

9/10 days... she's great. But, when she's having difficulties, it affects everyone around her. And, it's maddening at times.

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I just read a bio about asperger's. He stated that he has a special diet too, don't remember if he stated specifics, but he did say that once he eliminated certain foods his asperger's was most definetely a lot better.

Good Luck! I'll look at the book again, but i can imagine it's pretty difficult. I read that it hasn't been a diagnosed disease for that long and unfortunetely there isn't a lot of books about it.

he lists this site www.udel.edu/bkirby/asperger/

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I read that it hasn't been a diagnosed disease for that long and unfortunetely there isn't a lot of books about it.

he lists this site www.udel.edu/bkirby/asperger/

Asperger's isn't a disease. It's a neurobiological issue. Semantics, perhaps... but I just had to make that statement.

I'm actually doing a research paper on the "invisibility" issue. Lots of kids with Aspergers appear to be totally "normal" to those on the outside. It's only those of us on the inside who are privileged to know their true selves. It can be a curse and a gift, at the same time. My son could benefit greatly from occupational therapy, and he did benefit from it for 3 years. But, now... he's much older and he does extremely well in school (straight A student - gifted in math) so no one really "cares" that fireworks scare the tar out of him, that he can't yet ride a bike or tie his shoes, or properly eat with utensils. Those things are all "secondary" to the powers that be. Yet.... try as we may, we can't "teach" him these things. The educational system says he's "just fine" since his test scores aren't affected by his differences.

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Please check out the Pecanbread website. It is geared for children with Autism and ASD using the SC Diet and great results are being achieved - up to 100% success in some clinics. The Diet is also very helpful for children with behavioral and other problems also caused by food intolerance and adults with varied problems, not only celiac but other bowel and stomach related disorders, mental problems, anxiety and depression - well, just about anything you can think of.

There is lots of information and tips, recipes etc. I have found it to be a great resource. There is plenty of good information for children, parents and teachers and the page that describes what is happening in the gut geared in three ways for children, parents and health professionals is extremely useful.

http://www.pecanbread.com

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hello. I am new here and I am, quite frankly, losing my mind right now :huh: I don't know much about celiac disease and I don't know if my son could have that or not......but..well..here's the "lowdown":

My son is 10 and we have been on the ADHD roller coaster since he was in Kindergarten. He has been on all the psycho-stimulant drugs and built a tolerance to every one of them--not to mention he has a growth hormone deficiency and the stimulant compounded that problem.

In desperation, I decided to take matters into my own hands, forget the drugs, and research alternative treatments...and found that chiropractic was the best way to go for us...we have seen major improvements with adjustments alone, but still were struggling so the chiro ordered igG and igE testing.... and OMG! My son had igE (immediate) reactions to Wheat, Milk, and Egg whites....he had a high igG (delayed) response to GLUTEN! TO make matters much worse...he even has moderate igG reactions to corn, yeast, rye, safflower, mustard, malt, cheeses, yogurt (dairy, DUH!)and soybean! SO, no soy milk..no bread made with rye or corn.....and the rice breads I have been able to find online are made with safflower oil! EVERYTHING he loves to eat is now off limits...what am I going to do? I don't know what to feed him and he cries that he can't have pop-tarts, cereal, pizza, lasagna, spaghetti, breads, cakes, cookies, etc. I have searched for alternatives and substitutes but can't find ANYTHING completely free of all his allergens. He does love beans, steak, and chicken---but not without the seasonings and trimmings! Please tell me A-1 sauce is gluten free! Even then, I have to make sure it doesn't contain the other stuff! :( Can anybody help me? I think I'll eventually be able to find enough ways to prepare foods that he will be ABLE to eat..but how can I convince him to LIKE them?

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You might be able to use DariFree. It is a non-dairy powder that can be used in baked goods or as is. Just add water.

You can substitute potato starch for the cornstarch in a gluten-free flour blend.

You might be able to use Ener-G Egg replacer. It is a powder. Some people use a flax seed based egg replacer. I haven't used it myself.

The Tinkyada pasta that I have is just made from rice, rice bran and water. It even comes in kid friendly shapes.

With the replacements above, I'll bet you can make a banana bread.

Check the Namaste mixes. They are free of many allergens and are very good.

https://www.namastefoods.com/shopping/store...i?Category=Home

When you find a cake or bread that works, find different ways to use and serve it. That builds in variety.

Take ingredients that he already likes and work with those. If it helps, make a list and post it on the fridge,of all the fruits, veg, meats etc. that he likes and/or can have and start from that when you make meals. Think ingredients, not dishes. Sometimes it is easier to start with what you CAN have. I've done this in the past. Once in a while add in a new ingredient or serve it a different way. If you can get him to like a variety of fruits and vegetables that'll help alot. Introduce new ones in small quantity not only to him but to the family and if it doesn't go over the first time, don't cross it off the list forever. I got my son to eat tomatoes because I grew them myself last year. He still will only eat those from our garden! but that's OK. If possible, make simple meals for the whole family that he can eat too. Kids are more open to new things if they see the family eating those things and it helps them accept the changes. It's a process. Many of our families have gone gluten-free with us.

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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

The Explosive Child by Ross W Greene is a great book! We are still working on our four year olds intolerances through elimination but this book was invaluable for dealing with his rage.

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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,

I would highly recommend you check out the feingold website, feingold.org. My daughter goes into totally unreasonable rages as response to gluten, but also to food dyes (esp. red#40 and yellow, and these colors are in SO many foods and drinks), and also to aspartame and MSG. If all you are focusing on is the gluten, then he's probably still getting lots of artificial and dangerous additives. He most likely has a leaky gut which is why these molecules are escaping the intestine and going through the blood-brain barrier and affective his mood etc. Allergy testing may not, in fact will not, pick up or even test for, these kinds of problems with food additives. The feingold website has lots of good information for free, and then if you pay a small fee they will send you more info and you can access their forum etc. I think there is enough of the free info to get you started though. They are big on salicilates, these are naturally occuring toxins on fruits and vegetables that some people are sensitive to. personally, i'd start with cutting down on dairy, soy, and the artificial colors and MSG and aspartame (in diet drinks and gum). Then if he's still having problems i'd look into salicylates (mydaughter does seem to react to red grapes).

hope this helps, good luck!

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    • March 30, 2019 Until March 31, 2019
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      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
I enjoy listening to Ted Talks.  I found this one on dementia.  The take?  No success in developing drugs to stop dementia, so they are looking for ways to prevent it through diet!  Food can heal!   https://m.youtube.com/watch?v=f0WCb23KPEw Interesting!  
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