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    Gluten, Celiac Disease and the Brain


    Wendy Cohan

    Celiac.com 09/13/2008 - In the last two decades, research has begun to focus on gluten’s effects on the brain, including associations with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD).  Celiac disease itself occurs no more frequently in children with ASD than in neurologically normal children, but it appears there are other reasons to consider excluding gluten from the diet. “Mal-digestion of dietary proteins, particularly casein (from cow’s milk) and gluten-containing foods, produces small peptides (amino acid sequences) that may function as opioids”.   This is what is known as “The Peptide Theory”, also called “The Opioid Excess Theory”.  What this means is that incomplete digestion of specific foods allows the remaining small protein fragments, called peptides, to pass through the gut wall into the bloodstream.   Peptides are tiny, but children affected by dietary peptides often have what is termed a “leaky gut”, or a gut that is in some way damaged and unable to fully perform its protective function. In children (and adults) with ASD, gluten breaks down into a peptide called gliado-morphin, and casein breaks down into a peptide called caso-morphin. Eventually these peptides are thought to bind to opioid receptors in the brain, where they are perceived by the body as morphine-like substances.  It is this morphine-like or narcotic-like effect that causes many of the typical behaviors associated with ASD.  These behaviors can include sensory problems, lack of eye contact, self-stimulation, and altered pain threshold, among others.  Repeated exposure to gluten and casein causes a condition similar to opiate addiction - children with this condition often crave the very thing that is causing their problems; consequently, sudden, complete elimination of gluten and casein from the diet can cause withdrawal symptoms.  The discovery of caso-morphin and gliado-morphin in the urine of autism patients may be strong supporting evidence for the peptide theory.


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    Many parents and practitioners believe in also excluding “excitotoxins” such as dyes, food-additives, MSG, and sweeteners containing aspartame from a child’s diet (Excito-toxins are also suspected to play a role in Attention Deficit Disorder (ADD) and ADHD). Complete allergy testing, as well as testing for Candida (systemic fungal overload) is also recommended.  A good time to do this is after your child has improved somewhat and is stabilized on a gluten-and-casein-free diet.  You will know when your child is ready to move on to the next level.  Careful treatment by a clinician skilled in working with special-needs children is essential, and certain types of body work such as IMT (Integrated Manual Therapy) can be important in tackling these challenges.  Patience is important – it may take only a few days for milk-derived peptides to leave the body, but gluten-derived peptides can persist for several more months.  Discuss keeping a food diary, and appropriate timelines for an individual child’s response to a special diet, with your practitioner.

    For those skeptical of altering a child’s diet to effect positive behavioral and neurological changes, there are some small clinical studies (and more needed) and thousands of anecdotal reports from grateful parents whose children have demonstrated spectacular and lasting changes from a gluten and-casein-free diet.  That is not to say that the diet is completely “curative”, or that an unrestricted diet that includes gluten and casein “causes” Autism (which may be due to a variety of factors).  Here is a thoughtful passage from Marilyn LeBreton’s book, “Diet Intervention and Autism” :  “I knew I had to give the diet a go…..It seemed the most sensible route of treatment to try with him (her young son “Jack”).  It did not involve giving him drugs, nor did it involve very intensive behavioral treatments…”  In another passage she writes, “I knew about the (Gluten-free/Casein-free) diet for six months before I implemented it with my own son…I now bitterly regret these wasted months.”

    A CDC report issued in 2006 estimates 300,000 school-age U.S. children have Autism, a staggering statistic with wide educational and social implications.16  In the book, “Autism Spectrum Disorders”, Chantal Sicile-Kira relates that “with a diagnosis rate as high as 1 in 166, and in some places 1 in 150, everyone knows someone whose life is touched by autism.”  For families directly affected by Autism Spectrum Disorder, attending a support group is a very good idea.

    Gluten ataxia is a rarely diagnosed and frequently overlooked condition* responsible for a set of symptoms usually labeled “sporadic idiopathic ataxia” - meaning that symptoms arise spontaneously and sporadically, and cannot be traced to any definitive cause.   This condition usually occurs in adults and seniors and manifests in a variety of neurological symptoms:  severe headaches, lack of muscle coordination, drooping eyelids, gait and balance disturbances, drooling, numbness, tingling, and weakness in the extremities, and problems with speech and word-finding.  Usually the client is worked up for M.S., Parkinson’s, ALS, and other neurological disorders but is negative.  Repeated MRI scans cannot pinpoint the exact cause of these symptoms, which can be severe and debilitating.  Once the diagnosis “sporadic idiopathic ataxia” is given, they are offered supportive but not curative treatment.   Fortunately, some patients are able to find a neurologist who specializes in difficult diagnoses.  Often the diagnosis of gluten ataxia is only made when the patient reveals a past positive test for gluten intolerance, family history of celiac disease, or a history of gastrointestinal problems like irritable bowel syndrome or colitis.  In the case of gluten ataxia, gluten cannot be properly digested in the body, and certain protein deposits develop in the brain, causing changes that affect the neurological system.  Complete avoidance of gluten in addition to supportive physical and cognitive therapies can sometimes reverse many of the patient’s symptoms, but complete recovery is not always possible.  A very poignant and thought-provoking article on gluten ataxia was published in “Living Without”, Spring, 2007, and it is well worth reading if you or someone in your family is experiencing problems with movement, strength, or balance.

    Peripheral neuropathy, common among diabetics, can also be related to gluten intolerance.  Neuropathy results in painful or numb extremities, including the feet, so it impairs mobility and increases the risk of falls.  It is similar to the “pins and needles” feeling one gets from siftting on the knees too long, only much more intense and constant.  The pain can be so severe that it is necessary to take pain medications.  In a book unrelated to gluten intolerance, John A. Seneff  explains that the amino acid Acetyl-L-Carnitine may have protective and restorative effects on the nerves involved in this disorder.  Interestingly, patients with celiac disease and gluten intolerance often show low levels of L-Carnitine and benefit from supplementation .

    In addition to the above conditions, many gluten-sensitive individuals report mental sluggishness, “foggy thinking”, and forgetfulness.  I’m sure we all would like to find a reason for our occasional memory lapses, but in some people, gluten-sensitivity may induce cognitive symptoms that impair job performance, relationships, driving ability, and general safety - these cases require evaluation by a physician.

    Gluten sensitivity as a factor in the development of schizophrenia has been substantiated by a number of epidemiological and clinical studies.  It has also been noted that this psychiatric disorder rarely occurs in countries where wheat and other gluten grains are not often consumed.

    I believe that we will find that more and more neurological conditions are related to impaired digestion of gluten from grains, and casein from dairy products.   If you or a loved one have any neurological symptoms, especially symptoms not attributable to any other cause, it would be worthwhile to investigate gluten and or casein sensitivity with an experienced medical practitioner. In my experience, a naturopath or MD/ND is the best place to start.  Of course, it is always important to see your medical practitioner to track developmental milestones and growth patterns in infants and young children.

    * Sporadic Idiopathic Ataxia accounts for nearly 74% of all patients who have ataxia, and of that 74%, nearly 41% have positive antibodies indicating gluten sensitivity (Lieberman, The Gluten Connection, 2007.)

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    Most interesting regarding the gluten/ataxia/neuropathy connection. Within the last few years my adult daughter and I have been tested and diagnosed as non-celiac gluten intolerant/sensitive by a gastroenterologist. I also have a mild peripheral neuropathy. My father has spinal cerebellar degeneration (similar to a neurological disease like MS or Parkinson's) and peripheral neuropathy. I am interested in pursuing the Acetyl-L-Carnitine; will check this with my doctor. (It is also recommended for Chronic Fatigue Syndrome which I also now have.)

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    Guest Pam Collins

    Posted

    I have tested negative in 04 & 09 for celiac disease. I'm about to be tested again. I went to see a neurologist last year for memory problems, ataxia, and balance issues. Everything came out negative. He told me I was fine, just deal with it when it happens. I am VERY disgusted with the whole ordeal. I also have diplopia. Tentative diagnosis of sero-negative RA, have fibromyalgia, and also irritable bowel. Tremendous bloating, flatus, floating stools etc., at times.

     

    I have never seen anything linking the neurological problems with celiac disease. I don't want celiac disease but what an answer to prayer if I find this is what I have been experiencing for all these years.

     

    If I test negative again I start on my search again. Had been on a whole foods, no processed foods diet (lost 33 lbs.) and my body was doing so much better. Told my allergist about this and also starting to have hives/rash at times - very itchy. He suggested to have this test again. There are times I'd have gluten containing foods but was infrequent.

     

    Thank you for this article and site.

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    Guest Kristen

    Posted

    I have celiac disease and stumbled upon this article when searching for info about L-Carnitine.

    I'm very intrigued by the connection of casein and gluten creating an opiate-like drug effect in the bodies of those with atrial septal defect and attention deficit hyperactivity disorder. Parents who have tried to remove those foods from their child's diet "cold turkey" and had adverse reactions think it didn't work, but its really because its like a drug withdrawal, it makes so much sense now. I like how this article made use of science in a very easy to understand way. Thanks.

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    Guest margaret rose sullivan

    Posted

    I have tested negative in 04 & 09 for celiac disease. I'm about to be tested again. I went to see a neurologist last year for memory problems, ataxia, and balance issues. Everything came out negative. He told me I was fine, just deal with it when it happens. I am VERY disgusted with the whole ordeal. I also have diplopia. Tentative diagnosis of sero-negative RA, have fibromyalgia, and also irritable bowel. Tremendous bloating, flatus, floating stools etc., at times.

     

    I have never seen anything linking the neurological problems with celiac disease. I don't want celiac disease but what an answer to prayer if I find this is what I have been experiencing for all these years.

     

    If I test negative again I start on my search again. Had been on a whole foods, no processed foods diet (lost 33 lbs.) and my body was doing so much better. Told my allergist about this and also starting to have hives/rash at times - very itchy. He suggested to have this test again. There are times I'd have gluten containing foods but was infrequent.

     

    Thank you for this article and site.

    Get an endoscopy done. That will tell you definitively if you have celiac sprue or not (a blood test is not reliable).

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    Guest Patricia McMillen

    Posted

    THANK YOU FOR ALL THIS INFO... I'M JUST LEARNING. I WONDER WHAT INFO IS AVAILABLE REGARDING THE ELDERLY IN NURSING HOMES, THEIR DEMENTIA AND DIETS.

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    Guest sharon wiman

    Posted

    George has had so many problems and was never made aware that his brain was was also effected by gluten...wow.

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    Guest Wendy Cohan, RN

    Posted

    THANK YOU FOR ALL THIS INFO... I'M JUST LEARNING. I WONDER WHAT INFO IS AVAILABLE REGARDING THE ELDERLY IN NURSING HOMES, THEIR DEMENTIA AND DIETS.

    Hi Patricia,

     

    Well, very, very little is known and I don't think this is being looked at, although I know another nurse who is interested in this topic. She is the gluten-free RN - Nadine Grezskowiak.

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    Guest Wendy Cohan, RN

    Posted

    Get an endoscopy done. That will tell you definitively if you have celiac sprue or not (a blood test is not reliable).

    You do not have to have celiac disease to experience neurological effects from gluten, so having an endoscopy done isn't necessary and it is invasive. I advise having an endoscopy done if malabsorption issues are suspected, for failure to thrive and for chronic digestive complaints, though.

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    Guest Esther Russell

    Posted

    I am still having tests but my doctor believes that I have gluten ataxia. I was wondering is it possible to lose a day? The day was like a blur I can't remember periods of it and I was falling and was totally not my self. I'm really embarrassed but think it is linked to the ataxia. It was very frightening.

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    Guest margaret-rose

    Posted

    You do not have to have celiac disease to experience neurological effects from gluten, so having an endoscopy done isn't necessary and it is invasive. I advise having an endoscopy done if malabsorption issues are suspected, for failure to thrive and for chronic digestive complaints, though.

    Hey Wendy it is celiac disease she is experiencing...I know I have it.. Do some research and listen to what her symptoms are, it's a no-brainer and you're a registered nurse???

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  • About Me

    An RN for 14 years, I have been following a strict gluten-free diet for six years of improving health! Now I help others as a Celiac Disease/Gluten Intolerance Educator. I work one on one with people on meal planning, shopping, cooking and dining out gluten-free. I will also work with children who have behavioral issues related to gluten or other food sensitivities.  My book "Gluten-Free PORTLAND" is a comprehensive resource guide to the gluten-free diet and is available on my website www.glutenfreechoice.com. My other websites are: www.WellBladder.com and www.neighborhoodnurse.net.

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.