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Childrens Behaivor


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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missy'smom Collaborator
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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Cinnamon Apprentice

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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dbmamaz Explorer

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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frec Contributor

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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DingoGirl Enthusiast
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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  • 2 weeks later...
pricer15 Newbie

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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fedora Enthusiast
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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Dennis wayne Newbie

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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  • 3 weeks later...
rick-spiff Rookie

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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jayhawkmom Enthusiast

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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rick-spiff Rookie

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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jayhawkmom Enthusiast
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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AliB Enthusiast

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.

Open Original Shared Link

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  • 1 month later...
adhdwarrior Newbie

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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missy'smom Collaborator

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.

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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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  • 1 month later...
swalker Newbie
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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Lizz7711 Apprentice
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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      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
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