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Celiac Causes Neurological Disorders: Scientists Discover Root Problem

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Experts are looking into whether celiac causes neurological disorders. The disease is on the rise in the U.S. and so are other neurological disorders that were once considered less common. We all know that celiac disease is a problem of the small intestine. But most of us are probably unaware that according to scientists, celiac disease causes neurological disorders, too. Conditions from brain fog, to tingling and numbness sensations in your extremities, to developmental delays and learning disorders are all found in some patients with celiac. Experts think that this is because celiac disease causes neurological disorders. Autoimmune disorders like MS (multiple sclerosis) and rheumatoid arthritis are also connected to celiac disease. Even movement disorders like ataxia, and psychological issues from irritability or depression to schizophrenia can be associated with celiac disease.

Undiagnosed Gluten Intolerance may be Causing Your Symptoms

celiac disease causes neurological disorders

Celiac is often the root cause of neurological disorders.

It seems crazy to think celiac disease causes neurological disorders like ataxia, MS, and schizophrenia. If you suffer from a neurological disorder, an unknown issue with wheat gluten could be the hidden cause.

Alternative medicine looks at the connections between food and health, and special testing often reveals food intolerance. When the body develops celiac disease it destroys the digestive system. There are real scientific studies that have proven that celiac disease causes neurological disorders. How? Celiac sprue is a condition that damages the small intestine. This will destroy the gut flora and will cause nutrient deficiencies. Those deficiencies will affect the brain. There are a whole host of forums filled with people that claim celiac disease causes neurological disorders. These people have made recoveries from a variety of neurological disorders after going gluten free.

I hesitated to write this article about whether celiac disease causes neurological disorders. I sat on it actually for quite some time. The claims sound so incredulous, how could anyone actually believe this stuff? I tried to put myself back into my own shoes a little over a year ago– back before things got so crazy around our house. I thought about what life was like back before we ever stepped foot into a Whole Foods store, or went to Trader Joes for anything other than gourmet cheese or those awesome appetizers in the freezer section. That me would have read the title of this article and thought, “What an extremist nutzo.” Then I would have picked up the phone and speed dialed the local pizza joint for dinner, too.

So What Makes me Believe Celiac causes Neurological Disorders?

Well, we had a very personal experience with a neurological disorder and it went away after we started a gluten free diet for celiac. In late September of last year my son received his preschool vaccinations. Within three weeks he became a real behavioral problem at school, and by six weeks we saw his first tic. By the time the Christmas holidays rolled around he was nearly impossible to take anywhere as he was an emotional time-bomb in the making and so ticcy that it was hindering his daily activities. We kept him home from preschool for a couple weeks to limit his stress, but it didn’t work. Then came the insomnia. He would just lie awake blinking for hours. I used to sit in his room and choke back the tears. To comfort him I fed him more of his favorite foods: pizza, mac and cheese, Christmas cookies, etc. How did I know that the very things I was doing were actually making his condition worse? His undiagnosed celiac was causing his neurological symptoms.

Before I knew that celiac disease causes neurological disorders I had a lot of other testing done. I visited his pediatrician, the pediatric neurologist, a naturopath, a general practitioner, an ophthalmologist. We had a CBC, titer test, EEG, eye exam, acupuncture, you name it. I even went as far as giving him a pyramid-scheme all natural remedy with no scientific basis for cure, too. The only proof it worked was the sales pitch I got from the supplier. Crazy, I know. Desperate times call for desperate measures.

Then I found a forum about tics and a wonderful person by the name of Mary opened my eyes. She claimed that celiac causes neurological disorders. She insisted that a gluten free diet  that was also casein free helped cure her son. Intrigued, I ordered a white blood cell food intolerance test. Low and behold I discovered that my son was also intolerant to wheat. Is he celiac? Yes. But that diagnosis didn’t come right away. Our treatment plan for his tic disorder included many natural dietary and supplemental changes. Now, after many years he no longer has any symptoms of a chronic tic disorder. He’s still gluten-free. Is he cured? I wouldn’t say he is cured. I would much rather use the term “recovered”.  Any exposure to an offending food will trigger symptoms. He doesn’t tic anymore, but he will get headaches from gluten. It also causes irritability. But the constant ticcing is definitely a thing of the past. So are a whole host of other symptoms that we thought were just a part of his personality. In addition to going gluten and corn free (his other main intolerance), we use vitamins and minerals on a daily basis. I have done a lot of research on cerebral allergies, particularly gluten intolerance.

Scientists on Whether Celiac Causes Neurological Disorders:

Celiac causes neurological disorders infographic

Studies show undiagnosed celiac causes neurological disorders like these.

Here is what I have found when I researched to discover how celiac causes neurological disorders like motor tics:

K. Mustalahti, of the Pediatric Research Centre, University of Tampere, Finland states: “Recently, a growing body of distinct neurologic conditions has been connected to untreated celiac disease, mainly in middle aged adults. These manifestations are usually chronic, such as occipital lobe epilepsy with cerebral calcifications, cerebellar ataxia, progressive leukoencephalopathy and dementia. Seven per cent of all untreated celiac disease patients are diagnosed on the basis of various neurological symptoms. Although earlier studies reported neurologic disorders in patients with classical gluten enteropathy, some recent studies report neurologic symptoms in otherwise asymptomatic celiac disease patients. The pathogenic mechanisms underlying neurological disorders remain obscure, but immunological mechanisms are implicated. In few cases neurological symptoms seem to be alleviated by gluten-free diet but mostly the disorders are permanent” (712). The current criteria for celiac disease may give the false impression that celiac disease is purely a gastrointestinal disorder with manifest small-bowel mucosal lesion” (713). Excerpts taken from: “Unusual Manifestations of Celiac Disease” Indian Journal of Pediatrics, Volume 73, August 2006.

Nathanel Zelnik, et al states, “Although in the past celiac disease was primarily considered to be a gluten enteropathy, during the past two decades, its clinical concept has been expanded, and it is now considered a multisymptom autoimmune disorder, with most of the patients being asymptomatic, oligosymptomatic, or present with extraintestinal manifestations. Among these extraintestinal manifestations, there is a growing body of publications that report neurologic conditions that are associated with celiac’s disease (1672).” Zelnik et al concluded that:

the spectrum of neurologic disorders in patients with celiac’s disease is wider than previously appreciated and includes, in addition to previously known entities such as cerebellar ataxia, epilepsy, or neuromuscular diseases, milder and more common problems such as migraine headache and learning disabilities, including ADHD

(1675). Excerpts taken from: “Range of Neurologic Disorders in Patients with Celiac Disease” Pediatrics, Volume 113, June 2004.

In 2006, Dr. Bruce Roseman, M.D. et al, created a brochure entitled: Pediatric Neurology and the Many Faces of Celiac Disease. In it he states, “We will present in our findings and show the need for all health care workers to be aware of the strong association between celiac disease and pediatric neurological problems in order to diagnose and treat children in a timely manner.” Here is an excerpt about a patient who tested positive for CD and presented with a progressive 6 week history of tics much like my son did:

“Case 4: An 11 yr male with IDDM who presented with a progressive 6 week history of neck tics. Patient would extend, flex, and rotate neck abruptly lasting for approximately 30 minutes. These movements were not associated with change of mental status. On review of symptoms patient complained of chronic abdominal pain, no nausea or vomiting. Patient had no recent history of Strep infection, excessive video game exposure or sleep deprivation. Irritable Bowel Syndrome diagnosed at 5 years of age. Paternal aunt had Celiac’s Disease. On physical exam patient had no focal neurological deficits. Investigation (revealed): Ig A level: <6 mg/dl; IgG: 1400 mg/dl; Anti-TTG IgA: <3, anti-gliadin Ig G: 19 U/ml, anti-gliadin Ig A, anti-reticulin Ig A and anti-endomysial: negative. Biopsy: flattening of villi.”

And just like my son, this boy’s neurological symptoms improved on a gluten free diet. This is further proof that celiac causes neurological disorders in some patients with tics. If you have a child with a tic disorder, consider using alternative methods to treat symptoms. There is a strong correlation between motor tics and diet.

UPDATE: In Stavanger, Norway scientists completed a one year ADHD diet study in 1996:

The children in the Stavanger project all followed a strict casein-free diet the first year, and the results were overwhelmingly positive, Noedland says, pointing out that 22 of the 23 families reported clear improvements in their child’s behaviour and attention-span. The group set out to prove a theory by Oslo-based scientist Karl Ludvig Reichelt that a metabolic disorder making it difficult to break down certain proteins, including casein (the protein in milk that makes it possible to make cheese), could cause mental problems like Attention Deficit Hyperactivity Disorder (ADHD). A number of the children have since stopped following the diet for different reasons and some were put on medication, but after eight years six were still strictly avoiding all milk products and several had also cut out gluten, which is found in wheat, rye, barley and to some extent oats. “We see a clear difference between those who stopped and those who stayed on the diet,” Noedland says.

I  had many  initial disappointments with the medical community when my son was suffering from motor tics. There was no one who suggested that celiac disease causes neurological disorders. No one thought there was a connection between motor tics and diet. The doctors I first saw had a complete lack of knowledge about celiac disease. None of them were aware that celiac causes neurological disorders in children and adults. We visited several specialists and no one ever suggested we look into dietary changes. That is, until we saw a DAN (Defeat Autism Now) doctor.

It wasn’t until we sought help from other parents struggling with their own child’s autoimmune disorders or neurological dysfunctions did we finally got the vital information we needed to make a life altering change for our son. We are on the cusp of new discoveries in neurological science as medical studies are trying to catch up with anecdotal testimonies, by testing the claims parents are making. It is my sincere hope that more and more medical professionals be made aware of the gut-brain connection and begin to look more closely at the values in trying a gluten-free diet before advancing to more serious treatments such as the use of drug therapy.

A low carb gluten free diet does not always work in some cases, but it is certainly worth a try.

I want to thank Mary. She took the time to console me and educate me on how celiac causes neurological disorders like motor tics. This is outside what most medical doctors understand. Without Mary I would have never believed there is a connection between motor tics and diet. My son would not have had the wonderful recovery that he had on a low sugar, gluten and corn free diet. The healthy, organic, whole food diet he has been on did more than diminish the tics. It has brought peace to our house, improved my son’s learning abilities, his mood, and his overall sense of self. So thank you Mary.

Find Support for Celiac Disease and Neurological Disorders

If you are interested in trying a Gluten-free diet to help alleviate tics or other neurological disorders, visit our Healthy-Family forum! If you’ve got questions please feel free to scroll down and post a comment. I’ll do my best to answer you right away. Celiac causes neurological disorders, but it isn’t the only cause. It is possible to have a tic disorder that is not caused by celiac disease. Even without celiac, there is strong evidence that motor tics and diet are connected.

If you would like to learn more about being gluten free or other additional natural remedies for neurological disorders please visit the following forums:

Latitudes.org (An alternative treatment forum for Autism Spectrum Disorders and Tourette Syndrome)

Brain Talk.net

MDJunction.com (A gluten-free casein-free Autism support group)

Gluten Free and Beyond.org in association with The Gluten File, is a website about diseases related to gluten sensitivity.

Ataxia.org has a special thread in their toast forum that discusses Celiac ataxia.

You can also download and print this Gluten Syndrome/Celiac Symptom Circle for your convenience.

Update: View and forward the link to Dr. Ford’s two new educational You Tube videos about the Gluten Syndrome.

If you have additional resources you would like to share, please post a comment below.


35 Responses to Celiac Causes Neurological Disorders: Scientists Discover Root Problem

  • alison says:

    Caryn,
    Great article.I like how you pointed out how crazy it all sounds to people. I have an article on my website, Sure Foods Living by Dr. Ron Hoggan called How gluten affects learning and behavior.

  • Caryn Talty says:

    I just want to post an update on my son. We recently completed a genetic screening on him and learned that he does in fact have the gene that causes celiac disease along with another gluten intolerant gene. This basically means that he gets it from both sides of the family. Our doctor has since officially diagnosed him as ‘celiac’. We have been on the diet now for over a year and he continues to show the same stable improvement that he exhibited when we changed his diet (meaning we do not see wax and wane cycles as are typically reported by parents of kids with tics.)

  • Tina D says:

    My son is a Celiac kid and was recently diagnosed. His behavior has been a tough one for us to get under control. He has been a behavior problem at school for quite some time (ADHD type symptoms, impulsivity, aggression, etc.).

    We are trying the holistic approach as well as the GF diet too and his behavior has improved a bit BUT we have a looooooooooong way to go.

    If anyone has tried some of the holistic (herbs/products) and have had success please let me know.

    I, too, will keep you all posted on how we are doing on our journey.

    We were recently able to get our son an IEP based on Other Health Impairment although the school wanted to label him Emotional Disability (ED). His behavior is caused by the Celiac and it took some major research to show them this.

  • Caryn Talty says:

    Tina D,
    Thanks for stopping by and posting a comment.
    I am confident that if you stick to it you will see loads of improvement in time. It is a slow process but be encouraged, things do get better.
    I am wondering,
    Did the doctor test your son’s nutrient levels? Celiacs tend to have deficiencies that often cause irritability. Your son may have calcium deficiency (osteoporosis is a problem with many Celiacs), magnesium (which would help to keep him calm), B vitamins (which assist in brain function), Omega 3s (as many Celiacs have difficulty absorbing fats), and possibly vitamin D and zinc.
    Have you ever heard of Feingold organization? It may help you to follow an all natural diet (as artificial ingredients can also cause attention and mood issues). I’m not sure if anyone has advised you, but milk and soy can also be a problem for recently diagnosed folks. We had to eliminate milk for the first six months but now our son can have milk again in small quantities. We have supplemented with herbal remedies as well and tend to rely on them a lot when he is under the weather (which isn’t nearly as much anymore!)
    Visit the blog forum for recipe ideas and additional info if you’d like.
    http://healthy-family.org/forum/
    Caryn

    • Tina D says:

      A bit over a year later (After Celiac Dx Sept 09 for a 7 yr old boy)

      We have been VERY successful with our son. A year later is getting straight A’s and no MAJOR meltdowns. He has a WONDERFUL principal. Last year the principal who had a nurse for a wife stated Celiac does not cause Behavior issues, etc. etc He was CLUELESS. Thank Goodness he retired and we have an awesome principal. Our son has a GF classroom now and all supplies that are used in any classroom where he is are GF! They made the art room, music room, etc. GF. They refused last year! This year his behavior is off some days but he’s an 8 year old. He started 1st grade at barely over 30 pounds. He was weighed today and he weighs almost 58 pounds. He is still pretty thin but he’s not petite or fragile looking like he was in the past.

      We are still giving him supplements (Vitamin B, Omega 3, Nordic Berries, Calcium, Magnesium, Vitamin D, K, C, etc.). His teacher this year has been such a God send and his resource teacher has been a great addition to the team. Her first comment at the beginning of the year was that she didn’t think he should be in the cafeteria so he is no longer eating lunch where he was getting glutened on a regular basis last year (his teacher, principal and resource teacher last year just acted like he was a behavior issue and that it was my issue).

      This year it’s a great partnership with the school. Last year we picked him up almost every day. This year we have not had to pick him up once… Why? Because his teachers and administrator understands him and gets how to deal with the issues.

      Yes we are still working through some behavior issues with him, BUT his improvement is nothing short of miraculous this year.

      Thanks for all the support you give and advice you share.

  • Ruth Cohen says:

    Hi Caryn,
    Great article! I suggest looking into the Weston A Price foundation for help with recipes and research references. Low levels of necessary gut flora can contribute to many intolerances and their symptoms. Increasing dietary probiotics through fermented foods can have a positive effect. Fermented foods are also high in B vitamins and digestive enzymes. Looking forward to exploring this issue further with you!
    Ruth

  • Rozmarin Bruncaj says:

    Hi Caryn,

    I was diagnosed with celiac 13 years ago- I showed symptoms of herpetiformis dermatitis which is connected to celiac. I was misdiagnosed and mistreated for about 10 years before that.

    Anyway, the last 13 years were rough- the diet is extremely hard to keep. All labels have to be read before I buy it. I also developed other food allergies that are mystery for now, but milk definately is included- lactose free does not help.

    I have a now 6 year old son. He had seizures at the age of 1.5 and speech delay later. His doctor suggested he was autistic, but he was too young to be diagnosed at that time. I suspected that he had what I have and I put him on the diet. His speech rapidly improved and by now he closed a 1.5 year development delay gap (he also had speech therapy and specal instructions vigoriously ). It seems like we are ready for kindergarten. He has had no seizures since he keeps the diet.

    Looking back at my life, I had very tough emotinal problems, that went untreated. I think I was depressed when I was a teenager and later in my life on and off. I got a BA back in Hungary and became a math and ESL teacher.
    Nowadays my food allergies rule my life though and my time is consumed by trying to manage our health issues.

    I hope that science will advance regarding this matter and we will have more answers and solutions soon.

    Rozmarin

  • Alicia says:

    Hello,

    I love the article. It is so nice to hear other success stories. I “lost” my daughter to the autism diagnosis over one year ago. I believed in the diagnosis at first. I asked the doctor if I should put her on the GF/CF diet and they said, “The diet has not been proven to work. Your best bet is to get help through the state.”

    Of course, I didn’t listen and did more research on the GF/CF diet and decided to give it a try. For the first week, my daughter went through massive withdrawals. She was acting as if she had a drug addiction I took away her drug. It was horrible…but, then I knew I was onto something. Two weeks later I got my daughter “back.”

    She lost all of her OCD behavior, started playing with her siblings again, stopped her massive tantrums, stopped pulling her hair out, slept through the night and more…One year after her original diagnosis of autism, she was re-diagnosed and is no longer considered autistic.

    My daughter is proof that gluten can cause neurological disorders. I never had any idea how food can affect the brain. I will never look at food the same way again :)

    Thanks,
    Alicia

  • Caryn Talty says:

    Thanks for the comments everyone. We’ve been doing the diet for over two years now. My son’s immune system is much stronger than it was at dx and he is much healthier overall. He is still catching up growth-wise, is making great strides academically, and is thriving in sports and socially with the many friends he has made through school and in the neighborhood. We are very strict with the diet and are careful with cross contamination. We did a stool test last spring that revealed he still has slightly elevated gliadin antibodies in his feces. So we are vigilant. My son has not had symptoms of OCD since we began the GF, all natural diet. He also has stopped having rages and other antisocial behavioral issues shortly after we instilled the diet. We have seen slight ticcing when he has had accidental exposures (especially to corn, his other trigger) but they are very slight and pass as quickly as they surface. Although I am convinced that gluten played a major role in my son’s early illnesses both digestive and neurological, I also understand that the cure for him had to include a special diet that also avoided artificial flavors, colors, and preservatives, refined sugar, and all corn products of any kind. I say this for anyone who may find themselves still having trouble even after omitting gluten and casein. It may be that your child’s diet has to be taken a step further to avoid artificials and also corn.

  • Anna says:

    Hi, I’m hoping someone can tell me how long it takes to see improvement in your child once the diet is changed. My daughter has had tics for over 2 years and the doctor is telling me that she has tourette’s and was likely born with it. I don’t believe this – I’m convinced that something caused the tics – but I don’t know what. For this reason, I have turned to a Naturopathic doctor for help as my daughter’s tics have gotten worse. She had suggested to eliminate all dairy and gluten products as well as products containinig artificial flavoring, etc. My child is currently taking supplements as well as Omega-3. I’m currently waiting the results of an allergy test to see if my child is food intolerant to some products. I’ve also have been reading a lot about vaccinations being the cause for tics. I’m hoping someone can help me and give me some hope as I have no where else to turn and I don’t know who to believe anymore.

    • Caryn Talty says:

      Anna,

      I understand your frustration completely. Hopefully the allergy test will give you something to go on.

      While you are waiting for the results, you can inspect your household products for toxic chemicals that could be triggering symptoms. There may be mold present too that is triggering symptoms. Many of these kids are very sensitive to scents, especially from products like candles and glade plugins. We went organic with bath soaps and shampoos, and we had to go gluten and corn free too to relieve skin issues (itchy scalp, etc…) So you may want to find pure, all natural soaps and shampoos if you haven’t already. Not everyone with tics has gluten/casein intolerance. I would try doing the Feingold diet first and see if that helps while you are waiting for results. Feingold has materials that help you shop, cook, and maintain a healthy lifestyle while avoiding artificial chemicals. We are members.

      We never did an IgE allergy test, ours was an IgG test, which was for delayed food intolerances. From what I’ve read, many times the allergies on a person’s IgE results will differ from their IgG results, which is why many docs say the IgG is unreliable.
      We initially committed to the diet for 6 months without quitting. By that time we had seen significant improvements but there were still many symptoms. By nine months we turned a corner and it seemed our son’s immune system was getting stronger. 1 1/2 years into it he was completely symptom free. Our initial diet was very restrictive but after he improved we became relaxed and allowed gluten/corn free organic sweets.

      After doing this for 2 1/2 years I have come to believe that our son has a poor sulfation system– he has a hard time detoxing his body– and keeping the body in proper balance reduces and often eliminates symptoms. In our case my son’s symptoms are immune-based. I have seen the pattern so frequently now that I am convinced of it. It could be related to the gluten antibodies, or could be something else. I don’t know if the celiac causes the tics directly, or if the breakdown of the body from the celiac caused the development of another autoimmune condition that is regulated by diet and supplements
      .
      Your Naturopathic doctor is prescribing a diet that has been known to be helpful for many folks with tic disorders and autism. It wasn’t enough for us to be GFCF. Our son had major problems with corn and we had to go to great lengths to eliminate it (no vanilla extract, citric acid, iodized salt, only grass fed meat or free range). We had to further eliminate about 14 other more mild allergies including peanuts, and all sweets before we saw improvements.

      Mycotoxins and candida can also cause disease and many folks who have kids with tics find that their child really has fungal issues (biggest contributors are wheat, corn, and peanuts). Metals can also be a problem, and a child who has metabolic issues and improper liver function will have a difficult time processing and eliminating metal toxins– this is where the vaccine connection comes in. But I don’t believe it is a stand alone cause. We tested for metals and in our case our son had no metal toxicity (except for copper, which is from diet mainly). He was very zinc deficient and was low in many nutrients, including iron (sign of possible celiac). There are many places where you can get testing done. Check out Enterolab in Texas for gluten, wheat, milk intolerances and celiac. They will mail the testing kit to your house and will email you the results. You can do it without a doctor’s script if you need to. We use them regularly for our family’s labs these days. Great Plains Laboratories also has testing specific for Tics/Tourette Syndrome. Testing through G.P.’s requires a doctor’s script but some can be done at home (which is very convenient when you are dealing with a small child).

      I also highly suggest you pick up Sheila Rogers book, “Natural Treatments for Tics, Tourette Syndrome” at Amazon. The book gives a nice overview of possible treatments. The reason to give up milk and wheat/gluten has to do with inability to process the protein chain, allergy factors, inflammatory factors, and/or auto-immune factors that might be present (celiac, in example), and fungal issues. If the problem is fungal you should look into an initial diet that reduces fungal growth and is more restrictive than GFCF. Check out our “SCD” forum board at Healthy Family for more information. There are different fungal diets discussed.

      All the best,
      Caryn

    • Anna says:

      Hi Caryn, thank you so much for taking the time to write back. I feel more comfortable speaking to someone who is going through the same thing and can give me some advice. I really need to do something to help my daughter as she is only 6 years old and have severe tics. The tics are so bad that she has neck and back pains as a result. My next step is to see a Registered Massage Therapist as I don’t have much faith in Reiki which was suggested. I kind of think too that the Naturopathic specialists go to great lengths to try and get you to spend more money by giving you false hope at times as this is the impression that I’m getting from my doctor. My daughter’s pediatrician has different views on this matter and insists that my daughter was born with TS and that there is no scientific proof that supplements and gluten/casein free diets are as effective as people say. I don’t know who to believe anymore, I’m so confused?

      A few days ago I started my daughter on a gluten/casein free diet but things aren’t going well. She refuses to eat the new foods introduced as complains about the awful taste. I’m not sure how I’m going to handles this. She loves her milk and dairy products as well as pasta/breads and personally I have tried some of the gluten-free products and I can fully understand why my daughter won’t eat them – they taste awful. I’ve even gone to great lengths to try and flavour some of the dishes, but nothing helps. It’s bad enough having to see her suffer in severe pain due to the tics but now I’m having a very hard time trying to get her to eat these new foods especially since there are so many restrictions. At least she can tolerate the supplements as I hide them in foods she likes (ie. peanut butter/orange juice) without her noticing. I’m very worried that she will end up losing weight and be more vitamin/mineral deficient because of the decrease in food that she can tolerate. Did you have a hard time with the foods and if so how did you get past this?

      I’ve become more depressed and cry alot watching my daughter go through this not knowing what will happen and if her condition will worsen. I can only hope and pray that she will outgrow this as her doctor mentioned which happens to most kids but in the meantime it’s so hard and so exhausting. Once again, thank you so much for your support and all your advice. It’s much appreciated.

      P.S. When I get the results of the allergy tests from the ND in one month, should I be concerned about a possibilty of having false readings as this seems to be mentioned alot. I don’t understand the point of getting tested if the test is not 100% accurate. This is where I’m very puzzled!

    • Caryn Talty says:

      Anna,
      If your daughter is resistant, you may want to start by just eliminating the artificial stuff in her diet. Trader Joe’s has a lot of products that are free from artificial ingredients, so does Whole Foods but they are more pricey. See if that doesn’t help you first. For some that is all they need to do. Feed her mainly organic fruits and veggies and grass fed/free range meats (not grain feed animals that were on antibiotics). This will provide heavy nutrients for her. To get her motivated, you may want to invest in a cute Bento box set for your daughter to take to school for lunch. There are many websites with sample meal ideas. If you get her involved in planning and preparing them she may get into it. They have a lot of Hello Kitty boxes. She would be so hip going to school with her cute set. We bought some extra plastic toothpicks that came in handy for lunch meat rolls (in lieu of sandwiches). They had animal ‘tops’ on them and my son loved them last year. Also, you may want to ‘do’ the diet with her as an act of solidarity. I did that for my son (and then cheated when he wasn’t around until I realized that I needed to be on it too.)

      We did a lot of different kinds of treatments before we found what worked. Go with your gut instinct. When you feel desperate you tend to want to try things that you wouldn’t otherwise think would work. We did a lot of different kinds of treatments (herbal, acupuncture, chriropractic, reflexology) before we did the diet. I went to a naturopath and was really turned off by her style. (She actually told us that she didn’t believe in allergies at all). We ended up going to a DAN doctor (Defeat Autism Now) and it just clicked for us.

      Our experience with our son’s restrictive diet was the opposite of what we expected and what our friends and family feared. We all thought the lack of ‘nutrients’ would be detrimental to our son. We had to avoid 17 things initially. Amazingly, the opposite happened. He started to grow and put on weight. Because he previously had so much intestinal damage and such a lack of absorption that he was not even utilizing the nutrients he ate when he was eating the wheat, dairy, and corn in his diet. After we removed them he slowly began to improve (but it took 6 months to really see a difference in him) and by nine months he had really turned the corner.

      If food is truly your daughter’s problem it will become so clear to you that at some point a lightbulb will go on in your head and you will just ‘know’ that this is it, especially after you have been on an appropriate diet for at least a month. Dairy clears in about 10 days but gluten can take years. You will start to see improvements after about a month, and healing within a year. If I could give any advice at all to someone newly on a gf diet I would say to avoid the gf snack product lines for the initial period. They are low in nutrients and high in sugar for the most part. If the problem is also fungal they will not help you to alleviate symptoms. You can still give your daughter sweet treats but will need to bake them yourself and use honey instead of sugar.

      I used to cry a lot too. I distinctly remember sitting up in my son’s room watching him blink away for hours, unable to fall asleep. I would just sit there in the dark wiping away the tears. I was in so much pain because I didn’t know how to help him. It was devastating.

      I understand your daughter’s frustration. But know that things will get better. When the two of you figure out what makes her tic and when she realizes that she can control her symptoms with diet and supplements, she will be willing to do the diet. My son is really great about it. If you get positive allergy results you may want to consider joining a local POCHA (Parents of Children Having Allergies) group and inquiring at her school about a group for kids with allergies. Our school doesn’t have one but I have volunteered to head it as there are many parents dealing with food allergies at my son’s school.

      You are not alone.
      All the best…
      Caryn

    • Anna says:

      Hi Caryn, I can’t thank you enough for reaching out to me and giving me the courage and support to go through this – I don’t feel so alone anymore. The only one’s who seem to understand and give you some hope are those who have gone through it themselves.

      I can’t believe that food intolerances could cause so many problems and that there is a gut/brain connection which I’ve been reading alot about. For a minute there, I thought that my daughter might have PANDAS but I doubt it now because her tics have always existed (even thought she did have a couple of soar throats within a month). The tics were not brought on “overnight” which is a sympton of PANDAS. Instead, my daughter’s tics change so frequently and in severity, that I don’t think it falls into the criteria for PANDAS. Have you ever come across this with your own experince?

      I truly believe that since my daughter was on alot of antibiotics from when she was a toddler, there is some connection with what is going on with her tics/TS. She also suffered from many febrile seizures. I believe that the antibiotics played a big role rather than soley a “heredity” thing even though my middle child had tics when he was young (didn’t know it at the time) and my husband does have some eye blinking/throat clearing now and then. My daughter’s tics are more “severe” than my son’s ever were and the worst one being the violent head jerks/shaking as this causes her so much pain and suffering.

      Getting back to the diet thing, what I have done for my daughter since she is not adjusting very well with the diet is to slowly eliminate/reduce some of the dairy products as this is the one food group which is extremely hard for her to give up rather than going cold turkey. I’ll give her 1 glass of milk instead of 4 and one yogurt every second day until I get the test results back and know which food(s) are the culprits. I really appreciate you letting me know how long it takes to see improvement as I don’t know what to expect. She is taking supplements, probiotics and omega-3 as well which I hope helps.

      For now, I can only hope and pray that I will find the answers that I’m looking for and be able to help my daughter.

      Caryn, I thank you from the bottom of my heart for all your support and words of encouragement. I’m glad to hear that things are going well with you and your son. I wish you all the best.

  • tomtic says:

    Try digestive enzymes like Trienza, or the equivalent from Kirkman labs. They can help break a lot of trigger foods down. Along with the probiotics, this can go a long way to help. Which probiotic are you using?

  • Jessika says:

    When people ask me “Oh well how did you know you were sick?” and I start to ramble off some of the things that were happening to me (pretty much everything in your opening-brain fog, tingling in arms/legs, and developmental delays) people just look at me like “oh yeah sure”. Even now 6 years after being diagnosed if I accidentally ingest gluten they all come back, tingling in my legs so bad I can’t sleep, I can’t pay attention to things/ I don’t make sense when I talk (according to family).

    I really like that you wrote this- sometimes I feel like i’m the only one who goes through those symptoms! I’m glad your son is doing better!!

    - Jessika

  • Derek says:

    What does the gluten intolerance have to do with tics appearing soon after vaccination? Did the gluten intolerance or the vaccinations cause the tics, and if it was the vaccinations, why would removing gluten help?

    I am 26 years old and I first noticed facial tics on me, forehead scrunching or eye blinking, soon after I was vaccinated in 2002. However, I’d been vaccinated before. I also ate at Subway a lot at the time.

    • Caryn Talty says:

      Derek,
      I can’t say for certain what caused what. These are only personal observations but they are shared by others I have met with similar symptoms either personally or in their child. From what I have read and learned about vaccines I now know that they are filled with anticellular ingredients which can cause damage in those that are metabolically unable to rid themselves of them. The very act of vaccinating is an attack on the immune system. The theory is to inject a small bit of the disease in hopes that the body will produce an adequate amount of antibodies to make the person immune to the disease. The problem lies in the the fact that some folks being vaccinated have a metabolic issue that is not tested prior to the vaccine. Then the vax acts as a catalyst and can turn on a gene for a disease state that was otherwise dormant. There is no law, no safe guard to protect these folks from an adverse reaction to a vaccine. Today we give over twice as many vaccines to our children than I received growing up. That’s a lot of chemicals, metals, floating around in our kids’ bodies. There hasn’t been adequate testing to determine what effect, if any, these metals have long term or over a wide range of folks. Study sizes are usually relatively small.

      I will say that in my son’s case optimal liver function is key to helping him remain symptom free. I believe the ticcing was a sign that his liver was over taxed and that he was being overwhelmed with toxins that his body just couldn’t get rid of.

      As far as gluten goes, aside from being inflammatory, it is also high in mycotoxins (along with corn, alcohol, and peanuts). Many folks get relief on an anti-fungal diet (which is low grain) because removing these foods lowers inflammation and also relieves some toxic overload. Mycotoxins are also connected to cancer.

      So there is no definitive answer other than to suggest you try it to see if it helps. Being celiac is not a given if you find that a gluten free diet is beneficial. There are nine gluten intolerant genes and only two are associated with celiac disease.

      In addition to removing gluten, I can’t stress enough how important it was for us to remove the corn and also the artificial junk in our foods. We eat grass feed meat and buy organic too. Have you seen “Food, Inc.”? It will change the way you look at dinner forever.

    • Derek says:

      So how would one get rid of heavy metals/other substances from vaccines? I’ve read water fasting and/or juice fasting can rid the body of foreign “toxins”. Not sure whether these are stored in the fat or in the liver. There was a guy named Jack Goldstein who apparently cured himself of ulcerative colitis via water fasting and a raw food diet. Apparently he tested his saliva, sweat, and urine during the fast and found decreasing levels of DDT as he went along. That said, I’ve tried water fasts before of two days, 4.5 days, 5.5 days, and three days, and wow, I think it’s rough. I came across a study recently via a Google search about a boy subject whose tics went away after five days fasting on spring water, and they introduced foods in high amounts into his diet after to determine which food was causing the tic. I’ve also read yeast can cause facial tics and/or Tourette’s symptoms.

      If these problems were from something that the vaccines introduced in my body in summer 2002, I would think my liver would’ve cleansed everything by now?

      Interestingly, my eyesight became progressively worse over the few months before my tics started, so I always thought they might have been related to some sort of strain because of that. My tics worsen when I’m concentrating, such as at my computer, reading, or driving, but they’re pretty minimal when I’m running, walking, or at the gym, or just hanging out. Generally speaking.

      Any thoughts?

    • Derek says:

      One more thing. I didn’t realize corn had gluten in it?

  • Derek says:

    Why are tics supposedly caused by gluten in wheat and perhaps corn gluten but not other cereal grains. Doesn’t rice also have a form of protein? Maybe it’s not called gluten but it is a cereal grain so it must have some protein that is perhaps similar.

    • Caryn Talty says:

      Derek,
      In many cases folks with tics also discover they have an underlying fungal issue. The three foods in the typical American diet that are highest in mycotoxins are wheat, corn, and peanuts. So removing them proves beneficial. Some go even further and remove all grains for at least a period of time. In our case we did an anti-fungal diet in the beginning and eventually were able to add back most foods we originally restricted. We still have to avoid wheat, corn, and yeast. We also avoid peanuts and although we don’t watch it, do not consume much soy. We do eat rice and we do eat potatoes. Some avoid both of those. After being on an anti-fungal diet a while you will notice a difference if that is what is causing your symptoms. A good probiotic is also very important. Kefir, plain yogurt, or a dietary supplement. All this helps to balance out the gut and heal the damage. If you have had a lot of antibiotics or have digestive problems then a fungal issue is something to test for and rule out as a possible trigger.

    • Derek says:

      Interesting. Thanks for the quick reply. I’m 26 now, and when my tics started when I was 18, almost 19, this was during a period in my life when I was on antibiotics for acne. However, I’ve been off of these antiobiotics for four years now.

  • Derek says:

    I’ve never been to a Chinese restaurant of Japanese restaurant before a few years ago and been served brown rice. Perhaps Asians were onto something. Perhaps eating white rice, contrary to popular American opinion now, is the better way and only way one should eat rice so as to gain the carbohydrate fullness of the food without any antinutrients or toxins. Thoughts, Caryn?

    • Caryn Talty says:

      That’s an interesting idea– thinking that the extra cleaning process would eliminate mycotoxins.

      I did research on white enriched rice a while back because I heard someone say it wasn’t gluten free on a board. I learned that they use wheat gluten and/or corn gluten to stick the added nutrients back onto the grain because the polishing process strips the grain of its nutrients.

      We currently eat both white and brown rice. Certain things taste better with white rice in my opinion. I buy organic and un-enriched white rice. I know that Doug Kaufmann (Know the Cause) advocates for brown rice and not white rice. He is one of the foremost experts in the field of mycotoxins and food. He has a television show and does podcasts as well which I download for free onto my iphone through itunes. I’ve bought two of his books and have recently gotten his audio books on fungi. A lot of what we discovered on our own rings true in his books and what he says on his show. We never did his diet exclusively but did do very similar things for our son’s cure.

  • DerekChaunessey says:

    I’ve been off wheat, and therefore gliadin, or gluten, since mid-December or so and I still have facial tics, namely forehead twitching and/or eye blinking. Once in a blue moon I’ve had a pizza or some bread, but honestly, only twice or thrice in this period. In 2010, I’ve had some corn and rice, but have tried to limit myself to grains in general and instead have been eating more yams and sweet potatoes. There is something called a lectin which is a protein which may cause neurological problems that actually stem from the gut. Something called a Paleo diet, which isn’t really a diet but what our ancestors ate for most of history up until agriculture about 10,000 years ago, is free of grains for the most part and may clear up tics. I’ve been mostly on a Paleo diet since January 1, however I have had various items not encompassed within the diet occasionally, like grains, legumes, dairy, and nightshades (potatoes, tomatoes, peppers, eggplant), which may or may not be encompassed within the diet.

  • Marlene says:

    Caryn – your information has just blown me away! I have been searching for an answer for about 2 years for my 7 year old daughter. So far I have self diagnosed her with ODD – Oppositional Defiance Disorder and also lactose intolerance and still searching for why she has reoccurring motor tics. After reading your article and all of your replies I can see that there is a clear connection between her behavior and her tics and why she is constantly complaining of stomach aches and sore neck and back. It has been under my nose this entire time! We have tried several times to eliminate dairy and in fact she was the one to enforce that. Years ago we switched from cow’s milk to soy because she didn’t like cow’s milk (I think it fascinating when your body sends you strong messages – we must listen!). Then finding out that there’s too much soy in everything we switched to almond and coconut milk. She seems to tolerate butter and the jury is out on cheese. We could never pinpoint her stomach pains. Even if the meal was dairy-free she could still complain. I didn’t think it could be CD but maybe that is exactly what it is. What tests do you recommend I get for her? Allergy tests? Celiac test? Tic disorder test? I can tell my daughter is “trapped” in her miserable shell. I know underneath all of the defiance, tics, disobediance and chronic pain that she is a loving girl that just wants to be happy. Can you offer some help in where to turn for tests? Thank you for all your help so far!
    Marlene

    • Caryn Talty says:

      Hi Marlene,
      Thanks for stopping by.
      I mentioned a few tests in the above comments but I realize that I never put out links, so I will do that here.

      https://www.enterolab.com/Home.htm

      Enterolab tests for gluten sensitivity and for a limited time, milk screening too, for free, in their stool tests. We have done the stool test, which is much more sensitive than a blood test (important if you have been doing GF already for a while, or if your child is 4 years old and younger because the blood test might be a false negative.) We also did their genetic screening test which is delivered to your house and is a simple cheek swab.

      http://www.greatplainslaboratory.com/home/eng/patients.asp

      Another place that we have used is Great Plains Laboratories. They test for yeast and bacteria in the urine as well as nutrient profile. It is called the OAT test (Organic Acid Test). We found it to be very helpful. They also offer a stool test for yeast and bacteria.

      You can visit a gastroenterologist as well and do the full panel of celiac tests:
      http://www.labtestsonline.org/understanding/analytes/celiac_disease/test.html

      We also have a thread from the forum board of possible lab tests:
      http://healthy-family.org/forum/index.php/topic,8.0.html

      While you wait for the testing, you can try epsom salt baths and magnesium supplements for those nagging neck pains. If she has a bad neck tic you might want to take her to a chiropractor for an adjustment. Some times this really helps.

      If her problem is yeast related then the butter wouldn’t bother her. Aged cheese and milk would though, as would dairy products that are not organic, pasture raised (because they contain fillers or corn byproducts in them.)

      Keep us updated on how she is doing and your progress.

      All the Best.

      Caryn

  • Kathy says:

    Caryn,

    I’m glad I’ve discovered your site! My son has been gfcf for 4 months now in an effort to alleviate tics/nightmares/anxiety/ADD/depression/intestinal issues. I’ve seen improvements in the tics, sleep disturbances and his “fogginess”, but I’d like to investigate additional food sensitivities. Which labs are the most reputable for IGG testing? I assume I will need a doctors prescription for this?

    • Caryn Talty says:

      Hi Kathy,
      Here is a listing from our forum board about possible lab tests:
      http://healthy-family.org/forum/index.php/topic,8.0.html. You will need a doctor’s script for an IgG test. Last May I had the honor of meeting Doug Kaufmann from Know the Cause television show. He explained to me that he was an original developer of that test and that the specimens are often contaminated with fungi and so the results are often skewed as a result. In our case the IgG test was the thing that really helped us, but we didn’t know anything about fungi at the time and hadn’t tested our son for fungal overgrowth issues. But I think there is something to what Doug was talking about, because all the foods we removed, all the foods he tested highly reactive to, were also highly fungal foods. His biggest intolerance besides wheat was corn, and it is the most highly fungal crop in the U.S. The IgG test is expensive and it might benefit you to try an antifungal approach first to see if your son responds positively to it. An antifungal diet is a sugar free, low grain diet that utilizes only specific fruits (high in antioxidants or green) and a variety of veggies and organic grass fed meats. Doug has a diet but it is not dairy free. One of the biggest components in an antifungal diet is probiotics, and you can get dairy free ones.

  • Nicole says:

    Hi Caryn,

    This is a great article. We just diagnosed our 12 yr. old with gluten intolerance a few months ago through an elimination diet. He is experiencing the eye blinking. For the first month they disappeared after taking him off of gluten but they are starting to come back and I am thinking that he is vitamin deficient. I want to get him supplements ASAP but am wary since I have heard bad things about a lot of supplements on the market. Is there any specific brand that you recommend for children? I have tried to give him a well-balanced diet but it doesn’t seem to be enough. Any help would be greatly appreciated!

  • Jennifer says:

    Gluten can really make a mess of things. It was one of the primary triggers for my son’s severe eczema. Once it was removed from his diet, his eczema cleared up 90%. Incredible. Like your son, he didn’t test positive with any allergy or sensitivity tests. Perhaps it was just the inflammatory proptoerties of gluten that set him off. I probably will never know the answer, but avoiding gluten certainly isn’t too difficult these days and I’m more than happy to do it to keep my son healthy.

  • Jennifer says:

    Thank you for all of your information, it is so helpful! My son was diagnosed with attention and memory problems this year. I knew there was more too it and after fighting my way through a lot of non believers, we found out he is allergic to wheat, corn, and peanuts. It’s been amazing how things have improved for us/him this year. No more attention issues, mood swings, etc. We are still learning all of the ins and outs of the foods since it’s only been a few months. The anti fungal sounds interesting, I will definitely read more.

    What I haven’t been able to find is a list of recommended vitamins along with dosage for children. Do you know of any resources or what kind of doctor I should see about this?

    Thanks again for the great site!

  • chellemills says:

    I’m looking for guidance or direction of sorts.
    My 13 yo son started “sniffing” at age 2 and at the time ALL the things that followed we thought were just “habits”. When his TICs became verbal at 7 he was diagnosed by a neurologist as having a TIC Disorder but said it was not TS and that he would “grow out of it”. HE HASN’T, it’s gotten worse!
    I whole-heartedly believe that changing him over to a gluten-free diet will maybe not correct completely but at least eliminate some of them. His academics are suffering (Personally believe b/c he’s so focused on controlling his tics that he can’t focus on his teacher/studies). His father wants to put him on ADHD meds..which he’s NEVER been diagnosed with.
    WHO do I take him to, where do I start? Do I try a chiropractor or an allergist? What kind of hollistic or naturopath doctor do I see? I KNOW no matter what I do, I will be the only one helping our son as his father is too self-centered to “alter HIS lifestyle” and has said so! In other words any diet changes will be in effect just every other week. I’m at such a loss, broken-hearted and struggling myself w/ his noises…

    • Just take a deep breath and try get centered again. If you believe in prayer, use it. The answers will come. It’s easy to look at the bad and hard to look at the good. But we have to see the good. When we are in the midst of what seems like a really bad setback it is hard to see that light at the end of the tunnel.

      I had to have a healing for myself many years ago because I felt just like you do right now. I had a lot of guilt about my son’s affliction and felt I needed to fix it so badly that I became obsessed by it.

      Your son needs to want to do this for himself. If he keeps to the diet he will eventually get better. But it’s a long process. He has to see that when he eats the wrong thing it will cause symptoms. He also has to have his own conscious to do the right thing when there is no one to watch him. The best way to do that is to not have bad choices in the house at all. Try to get him diagnosed to find out if he has celiac or gluten intolerance. For my son it can take 3 hours for his body to start reacting after he’s eaten gluten. But we have to do more than be just gluten free. We eat clean organic foods as much as possible. We avoid chemicals in the home and in our food. I clean with baking soda and vinegar a lot. We don’t use fabric softener or scented candles in our house. This is to eliminate added chemicals in my son’s environment that can irritate his immune system.

      Let your son guide both you and your husband with his wishes. Does he want to improve? What is he willing to do to get there? Coach him. Guide him. He will make the right choices when he sees that they bring results. Start with reducing or eliminating corn syrup, high fructose corn syrup, and artificial colors. Try reducing milk products too. These are all very common triggers. Is there slight improvement? When he indulges after 4 days without it does he get a huge influx of symptoms? Then move further. Take away the sugary junk. Does he see improvements? Is he happy? Does he want to limit the bread? Start slow. Cut it out for 4 days then have a pizza night. Is he really bad after pizza? Maybe he wants to go another four days and try again. Let him find his own triggers and regulate them. Give him confidence. Praise him when he makes good choices. Comment when you see a good day and ask him why he thinks he’s improved.

      I can tell you that stress levels can also play a major role. Look up ‘oxidative stress’. Other underlying conditions that cause learning problems too, like pyrrole disorder and magnesium deficiency can cause tics. Stay strong. Try to keep calm. It doesn’t help if you are fighting with your (ex?) husband. You need to be on the same team, so compromise. Let your son’s dad keep his food and convince your son it’s a good idea to try this crazy idea out. Send him with food when he’s with his dad.

      Stay positive even when you feel chaotic inside. Don’t argue. Be the peacemaker. If it’s the right thing and they feel it, all things will fall into place in time. When my son was first diagnosed we had all those feelings. We did. It was a struggle. Food is a tough thing to conquer. We’ve all got to eat. If you learn how to make really tasty healthy food, they will grow to love it. I’m sending a prayer your way right now. Have a blessed holiday with your family. Pray that you’ll find that peace in your heart that will help you move forward with confidence. Have faith. You’ll get there. It may take time but if you go with love you will get there.

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Healthy Family is an organic living website. It's mainly written by Caryn, a busy mom of 4. We talk about nutrition parenting, and education on Healthy Family. You'll find easy, family friendly organic recipes, all gluten and corn free. We offer shopping tips, craft ideas for kids, and product and book reviews, too. Caryn often talks about being a mom, honoring her Catholic faith and traditions, and the importance of eating healthy organic foods. Contact us if you'd like.