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Article: The role wheat plays in chronic tic disorders and other neuro


Caryn

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Hi all,

I'm still researching, but I have finally put together an article that touches on the subject a little more in depth. I have to specify that in scientific studies there is no consistent research connecting gluten intolerance to pediatric tic disorders, but I believe that is because Tourette Syndrome and chronic tic disorders are a clinical diagnosis with several very different possible causes (as we all know--- vaccine injury, Pandas, etc....), thus making it difficult to "prove" an association as subjects in the study may not have TS because of CD while others do. Gluten induced tics IMO are a small percentage of the population that suffer from tic disorders. If you look at the threads that were started by Claire a couple years ago you will see that many, not all respondents, had gluten intolerance or wheat allergy. In addition, most TS sufferers have multiple allergies and so it is hard to pinpoint what is causing the tics.

 

In our case it appears that gluten is the main trigger for tics. We have been gluten and corn free for six months now and I have noticed that even though I have reintroduced other foods on his original allergy test none have induced ticcing other than wheat or corn. (This does not mean that the intolerance or allergy to other foods are gone, it just means that the other allergies are not directly affecting the tics.) I have experimented with this on different occasions and the same always holds true. Corn causes him to turn into Tigger and bounce off the walls. If he's doing school work he's poking holes in his paper and scribbling like he's two years old. He wets his bed, can even have an accident at school. Wheat makes him tic, get very irritable--We have to dust off the naughty step too-- and it causes insomnia. All his major tics are gone and have been since we cleaned up the diet and began the vitamin treatments. A dietary infraction will cause a nose twitch to appear and it will remain fairly constant until the offending food has passed through his system (2-4 days).

 

I have to stress that we practice a diet that is as organic as possible (always organic eggs, milk, meat-- often fruit-- and veggies whenever possible) and no artificial anything including ascorbic acid (corn) unless absolutely necessary. Vitamins play an important role as he has an underlying condition (pyroluria) that could quite possibly be a direct result of the wheat intolerance issue, as it strips the body of vital nutrients. This could be a permanent condition, or possibly only temporary. A doc I am in contact with says there is new evidence to support a gut-brain connection. I will report on that later. This means that anyone suffering from pyroluria should investigate whether or not they have a gluten intolerance issue. You can have a major issue with wheat and not be celiac. I have to stress this, because a positive celiac test is pretty rare.

 

Of course Tigger fell off the bandwagon on Halloween (sneaking candies when we weren't watching him) and had a major regression that lasted a week. So we are getting him back on track again. It has been a long difficult week. (But again, the tics were not increased at an alarming rate, we mainly dealt with issues of mood/hyperactivity/behavior.) It was a nice wake up call-- a reminder for us about "the way things were" and why we are doing what we are doing with food avoidances.

Anyone interested in reading my article (and the accompanying research) please visit: http://healthy-family.org/celiac-causes-neurological-disorders/

 

Caryn

Edited by Caryn
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Caryn,

 

You said your son's tics are gone for the last six months when gluten & corn are eliminated from his diet. Do you mean COMPLETELY gone? No wax & wane cycle?

 

I am asking becasue your child has a very clear correlation between food & specific tics. My son had various facial & motor tics but i can never pinpoint what are the triggers. For him, it is not clear. So i take the comprehensive approach to treating his tics. My goal is to calm his nervous system thru various energy work type of treatments. And it is working, and best of all, thru using NAET, he is able to eat wheat, gluten, dairy.... It is a real blessing.

 

Pat

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We did the alcat because another parent suggested it, as it tests the white blood cells and is a good indicator of delayed intolerances. The company claims 80% accuracy on a double blind test (I'm not sure, you'll have to look at the site for specifics--this is off the top of my head).

I was intrigued by the NAET idea and read various postings on it. I may look into it in the future, but right now I am satisfied doing the diet. We have reintroduced all of the allergy foods except wheat and corn. Both substances continue to give Tigger problems. I am not sure NAET could 'cure' Celiac's Disease as it is genetic, and I have yet to start my research on corn (another elephant project). So NAET sits in my mind as a future possibility for a more 'normal' social life in the future.

And to answer your questions, yes, there is no waxing and waning with my son. This is why I have my suspicions with wheat. If it were true TS then he would have major wax and wane periods that would not be controlled with diet. We saw the major ticcing go away and for six months stay away. I had a titer test last winter and it came back negative. My son has never had antibiotics, and never got the MMR or flu vaxs, was never on soy formula (nursed exclusively 1st year) and does not have a milk allergy.

It just seems like his system got out of wack after his last vaccines and that was the catalyst that set the whole wheat intolerance issue into overdrive (IMO). His tics came on during candy season and peaked on his birthday, a month after Christmas. (Wheat, corn, artificial everything). I want to burn the video recording of that day. It is painful to watch. It was a gradual increase over two months that peaked and didn't change for the better until we started the diet.

I don't want anyone to misunderstand. My son is not 'cured'. I have to stress that. Trust me, gluten is in so many things and it is very easy for him to get cross contamination or accidental ingestion--playdough at preschool (not sure if handling it is okay, some celiacs say no), getting the wrong thing at the grandparents house (like Kelloggs Rice Crispies--honest mistake if you are older and don't have your glasses), or a friend's house. He is only 4 1/2, so with a lack of understanding mistakes happen. And besides, quite honestly, it is hard to get a handle on exactly what is safe to eat. (xanthan gum is grown on corn, white vinegar is made from corn, etc....) I just try a food out and see, one at a time.

I never see ticcing other than an occasional nose twitch now unless he eats foods with wheat or corn.

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Caryn,

 

Thx for your input. As i understand, NAET can also help with Celiac disease. It can help raise one's intolerance to gluten and dairy. However, i stress finding a good NAET practioner, as we have been thru 2 and finanlly found an ND who does NAET treatments, and i feel that she is the most qualified & experienced.

 

I was a skeptic at first but seeing that my son's asthma and his nasal allergies along with a chronic bleeding nose is gone. I am a believer. I also feel that it helps with his tics. It didn't happen over night, but over time, his tics are less and less over the course of treatments.

 

Also, i would like to point out, even someone with TS, diet and supplements can keep the wax & wane cycle manageable or to a minimal.

 

Pat

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Been meaning to post here re my status on NAET treatment. I've been treated so far for Vitamin B (inositol and other Bs), Vit C, sugar, strep, basal ganglia, strep antibodies, and bottomline, I still have vocal tics and OCD. However, I do feel my vocal tics have gotten a little better. Still treating for strep antibodies as it did not get treated after one treatment, and still need to treat for food additives and wheat, etc. I am a VERY skeptical person and even now, when the doctor does the muscle testing, I am checking her hand/arm movements thinking "she must be using different muscle so that my arms will go down" etc., but .. even with my being skeptical, I feel a slight improvement in my symptoms and so I wanted to share that with you. As I continue my treatment and find tics/OCD getting even better, I will post again.

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flower,

 

I am curious as to how your NAET practitioner come up with what to treat. Did you have a food sensitivity test, IGg to use as your baseline? Also, do you have any food or environmental allergies? I decided to take the allergy route of treatment due to my son was borned with asthma & later grew into his environmental allergies. So my son's protocol is aimed at allergy desensitization and calming the nervous system.

 

I think that NAET is effective if you are able to narrow down what are the cause of your symptoms. And given that you have an experienced practitioner. As i have mentioned before, i have gone thru 2 NAET practitioners and none of them did an IGg test as a baseline and both came up with different sensitivities and some of the sensitivites were inconsistent with my son's previous blood test from his former allergiest.

 

IMO, muscle testing is very subjective. It takes an experienced person to get an accurate test result. I have been practicing with my son to try to get a feel of how it works. It seems hooky, but it works. Give it a try.

 

Good luck and please keep posting. I hope NAET works for you. Have you considered consulting a homeopath for your OCD issue? I have done some digging and it can be effective.

 

Pat

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Patty,

 

My NAET practitioner has not done any food sensitivity test, IGg with me. Hm.. I wonder if my practitioner is a good one or not..? But I basically went in there saying "this is what i've read on the web, this is what I feel I may have sensitivities to, please test for these things and treat these first." I of course had to treat the 'basics' first but then she went right onto Strep/Basal Ganglia and Strep antibodies per my request.

 

I did have food allergy testing done with a regular allergiest before, and I was allergic or showed sensitivities to most food I love. I did show the practitioner those results too during my first visit. I do not know if I have environmental allergies. I keep trying to find a shortcut to treating my vocal tics and it looks like I am skipping so many steps. I should look into environmental allergies too.

 

By the way, I've waited a couple of weeks (or more) to write that I felt my vocal tics were getting better. And after writing that last night, my vocal tics were bad today. It may be because I was insanely busy at work today or because of the special sweets I had the other day that may still be in my system... Do not know but hopefully it will quiet down again.

 

Re OCD, when you say treatment by homeopath, what kind of treatments do they suggest?

 

Flower

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Flower,

 

I don't know exactly what is the homeopathic remedy for OCD. You may want to check with a homepath and ask about the treatment plan. I came across homeopathic medicine while researching for tics.

 

Pat

Pat, Check out the Pfeiffer Center's Website. I know they treat OCD. Google Dr. Walsh, too. You might get info that way too.

Bmom, yes, wheat and corn were "red" on the Alcat test. We do not have a definitive dx on celiac as I was uninformed at the time. (Alcat reported a medium intolerance to gluten, but did not report on whether or not he was celiac). To be honest, at the time I didn't have a clue. Hindsight is always 20/20. That is why I am posting what I have learned, in the event someone stumbles across this in the future. Now a blood test would come back negative regardless as he has been GF for too long. It is very hard to get a positive dx but a negative one does not mean that you do not have celiac's disease. Once a person develops celiac's disease they can NOT EVER eat gluten again. It is not reversible or curable. It is an autoimmune disorder that causes damage to the small intestine (and neurological damage in some cases). Antibodies are produced that attack the small intestine each time gluten is ingested, and in some cases attack the CNS. This is why I hesitate to do NAET for the wheat. My son really doesn't suffer from environmental allergies. Wheat and corn are pretty much it. I'm just going to wait and see. If the tics wax in the future despite the diet then I will look into it as a possible treatment.

Caryn

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  • 2 weeks later...

Here is an excerpt from an interesting article by Dr. Rodney Ford, M.D. (New Zealand)

"
Can gluten damage your brain?

I believe that gluten was actually causing these two children to be sick. That is the explanation for their "naughty" behavior, their moods and their headaches.

 

I postulate that gluten can damage your brain. I have come to this conclusion by the abundant circumstantial evidence from my observations of my patients who are gluten-sensitive. I have pondered the next questions: "Why do they have such an array of symptoms from gluten?" "Why do they recover so quickly when gluten is removed?" And "Why do they deteriorate so rapidly when only tiny amounts of gluten are eaten?" The concept of a brain/nerve disease can explain everything.

 

The brain/nerve hypothesis

"The symptoms from gluten occur through its action on the nervous system".

 

I propose that gluten-sensitivity is a brain condition. Each and every organ in your body has some form of brain/nerve control. I propose that gluten can injure the delicate nervous networks that control your guts functions. A malfunction will subsequently lead to all of the gut symptoms that have so well been described. In addition, gluten can also directly affect brain function, which leads to the primary neurological symptoms that are so commonly seen with gluten-sensitivity.

 

What is new?

There are a number of new ideas that I put forward. These are based on circumstantial evidence. They produce a unifying theory of the symptoms that are attributed to gluten toxicity.

 

* A brain disease

I consider that gluten-sensitivity is mostly a neurological problem. A major contribution to this debate is the realization that the brain has a central role in the expression of the symptoms that have, until now, been attributed to the local toxicity of gluten in the gut.

* A nerve disease

I propose that gluten-sensitivity is a nerve disease. There is a gigantic network of nerves that controls every function that your gut is programmed to do. There are as many nerve cells in your gut as there are in your head! (about 25 billion nerve cells). I call it your tummy brain (or gut brain). Your tummy brain can be directly damaged by gluten reactions. This is the cause of so many sore tummies and bowel troubles.

* A wide spectrum of neurological manifestations

For decades, there have been reports of unexplained brain and nerve symptoms which are associated with celiac disease. Although these associations have been described, there has been no universal mechanism proposed. However, if gluten is seen as a neurotoxin, then the explanation has been found.

* A very common disease

Reactions to gluten have recently been documented to be extremely common. About one-in-ten people (as ascertained by blood donor studies) have high levels of gluten antibodies in their blood. My clinical studies have arrived at this same high number of gluten-sensitive people. Others have data to show that it is even more prevalent."

 

Full text is available at: http://www.celiac.com/articles/1085/1/Glut...RACP/Page1.html

for anyone interested in reading more.

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  • 1 month later...

Caryn,

 

Since you are so up on this topic, I was wondering if you have any opinion or have read anything about a product called Gluten Ease? It's made by Enzymatica i believe.

 

I googled "gluten ease enzyme" and came up with a lot of articles, but thought you might have already looked into it?

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Gluten-Ease is certainly talked about on Celiac forums. I think it sells for about $19.99 per bottle. The theory is that a dose could come in handy in case of accidental gluten cross-contamination. The catch is that Gluten-Ease would have to be taken simultaneously with the gluten just as Lactaid has to be taken simultaneously with dairy products. The dosage is critically important since even a tiny amount of gluten is harmful to a celiac. If you haven't properly had your child tested for celiac disease than it could be a dangerous short term solution for a child who exhibits symptoms of gluten sensitive enteropathy/celiac disease. Many people go gluten free and get positive health results after years of 'false' negatives on celiac screens. They put more stock in a strict diet with results than a negative blood test and continual illness. There are countless numbers of people who have 'self diagnosed' because they couldn't get a positive on a blood test and were just sick and tired of being sick and tired.

 

We do not have a positive dx for celiac (as we went gluten free before we realized we should have done a biopsy first), but Tigger did test positive for gluten intolerance and had many of the gastro symptoms that are common, so I'm left feeling ambivalent about Gluten-Ease to alleviate purposeful gluten ingestion. I have that constant fear of the unknown-- is my child really celiac but I don't know it? Undiagnosed Celiac disease on a gluten diet leads to all kinds of autoimmune disorders, cancers. You wouldn't give sugar to a diabetic, or alcohol to a recovering alcoholic. Same principle here IMHO. Now if I had a biopsy done that clearly showed he had no celiac, had genetic testing done that showed he does not have the two genetic markers that lead to celiac disease, but I know he is lacking proper enzyme production in general. Then maybe I would consider it. I do plan to purchase Trienza for Tigger (and it does include enzymes for gluten and casein as well as salicylates), but I do not plan to allow gluten on the diet regardless. Damage to the small intestine leads to leaky gut and leaky gut can lead to candida overgrowth.... Too much of a risk IMHO.

 

I just want to throw this out there too-- Perhaps for some the GFCF diet works in large part because it avoids candida friendly foods in general. What causes the candida problem to begin with is a mystery, and certainly different for each child. (Damage to the small intestine is a biggie). Positive results on a GFCF diet does not necessarily mean a child is celiac or lactose/casein intolerant. It may mean that GFCF foods and enzyme treatments help kill candida overgrowth and this clears the system and diminishes tics. (Corn is a big candida feeder, too BTW). I want people to understand that gluten intolerance is 10% of the population and for those that genetically can't tolerate wheat or gluten the solution is DO NOT EAT IT.

 

Caryn

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  • 1 month later...

Caryn,

 

Not sure if this has been posted, but I thought I would put it on one of your threads to try to keep info in one place.

 

http://www.int.iol.co.za/index.php?set_id=...92424476C121112

 

"I could tell something was wrong with him as soon as he began eating solids as a baby. It was if the food was draining him," says Rita, 50, describing how her son Christoffer had yoyoed between passive and hyperactive behaviour until she had removed several staples from his diet including milk and grains.

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