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We all know that celiac disease is a problem of the small intestine, but most of us are probably unaware that it could actually be the root cause of a whole host of neurological problems from brain fog, to tingling and numbness sensations in your extremities, to developmental delays and learning disorders, autoimmune disorders like multiple sclerosis and rheumatoid arthritis, movement disorders like ataxia, and even psychological issues from irritability or depression to schizophrenia. You may think these claims sound like nothing more than a bunch of smoke and screens coming from greedy alternative medicine self-help sites designed to sell you the latest vitamin and mineral supplements and get you on their own personal and highly costly gluten-free product bandwagon, but there are real scientific studies supporting these claims. In addition, there are a whole host of forums filled with people that have made recoveries from a variety of diseases and disorders by avoiding gluten.
I hesitated to write this article. 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, 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 has happened to me since then?
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?
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 other than 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 for the first time since this whole crisis began. She claimed that a Gluten-free and Casein-free diet 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? Well, technically no. But I will say this much, he no longer has any symptoms of a chronic tic disorder now that he is 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 mild tic symptoms such as a nose twitch, and of course a bit of irritability, but the constant ticcing is definitely a thing of the past, and 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, and this is some of what I have found:
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.
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Tags: ADHD, Autism, Autoimmune Disorder, Celiac, Depression, Gluten-free, Learning Disability, Neurological Dysfunction, Research, Tic Disorder, Tics
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Meet the Author
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.
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.)
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.
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
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.
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
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
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
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.
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.
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
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!
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?
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
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.
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.
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?
One more thing. I didn’t realize corn had gluten in it?
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.
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.
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.
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?
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.
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.
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
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.