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Back To School: How Many, and Which Children Should be Gluten-Free?

Journal of Gluten Sensitivity Autumn Issue - Originally published October 7, 2014


Photo: CC--Damian Gadal

Celiac.com 07/19/2016 - We know that celiac disease afflicts almost 1% of the general population (1). We also know that about 12% of the general population has non-celiac gluten sensitivity, as indicated by elevated IgG class anti-gliadin antibodies in their blood (2). Although elevated antibodies identified by this test are often dismissed as "non-specific", they are clear evidence that the immune system is mounting a reaction against the most common food in our western diet. It is also true that many people who produce these antibodies and have then excluded gluten from their diets have also experienced improved health. Unfortunately, most of the individuals who have elevated IgG anti-gliadin antibodies and might benefit from avoiding gluten do not know that they are gluten sensitive and/or have celiac disease. Thus, we really don't know how many, or which, school children should be avoiding gluten to optimize their academic potential as they work their way through the education system.

Approaching this issue from a different angle, we know that between 10% and 15% of the U.S. population has dyslexia (3). About 60% of those with ADHD have dyslexia (3). If we calculate the prevalence of ADHD, at 8.8% of the population (4), then just the ADHD component, it should give us 5.28% of the population with dyslexia. But we can't tell how much overlap there is between this group and the group that constitutes between 10% and 15% of the population that are reported as having dyslexia. These disabilities have been given considerable attention and have been studied for some time, yet we really know little about their causes, except in cases of traumatic brain injury.

However, there is a startling study, reported in The Times ten years ago, from the Nunnykirk School in Northumberland, U.K. (5). The astounding results of this study continue to cry out for further research and possible replication. After 6 months on a gluten-free diet, testing showed that 11 of the 12 (92%) live-in students had improved their reading and comprehension at more than twice the rate at which regular students are expected to improve. Among the 22 students living in the community and attending this special school for dyslexic students during the day, 17 of them (77%) showed similar improvements (5). To put these results in perspective, special needs teachers are often very proud when they can help students achieve at rates similar to regular students. Doubling the rates of improvement is an astonishingly positive result! And a few of these students leaped ahead at six times the rate of normal students! The numbers of students involved in this study are too small to allow us to extrapolate to other dyslexic populations. And, given that the research was done in the United Kingdom, where definitions of learning disabilities, and other factors may be dissimilar, and that the work was reported in a newspaper instead of a peer reviewed journal, and the startlingly positive nature of these results, we really need further, carefully designed studies to explore this phenomenon.

The Nunnykirk findings are consistent with the extensive brain and neurological research that has been done at the Royal Hallamshire Hospital at the University of Sheffield, over the last two decades, by Marios Hadjivassiliou and his colleagues. They have found that a strict gluten-free diet can often relieve central and peripheral neurological symptoms.

Further, many prominent researchers who work with children and adults who have dyslexia characterize it as a neurobiological condition, and can demonstrate, with MRI, altered brain function in dyslexia (8). It is also clear that many cases of dyslexia are at least partly genetically conferred (8, 9). Neither are learning disabilities limited to dyslexia. Although some practitioners lump two or more learning disabilities together, the literature distinguishes between dyslexia, dysgraphia, dyspraxia, dyscalculia, dysphasia/aphasia, auditory processing disorders, visual processing disorders, etc. Some such practitioners not only differentiate between types of learning disabilities, they also differentiate between sub-types of disabilities. For instance, motor dysgraphia (where fine motor speed is impaired), dyslexic dysgraphia (where normal fine motor speed allows them to draw or copy but impairs spontaneous writing) and spatial dysgraphia (where handwriting is illegible due to distortion) can each be identified based on symptoms (10). Similar sub-types are seen in other learning disabilities.

But what if the findings at Nunnykirk School are broadly applicable to all of these types of learning problems? Or perhaps further research can tell us which types and sub-types of learning disabilities can often be alleviated by a gluten-free diet.

My own professional observations suggest that the number of students helped by a gluten-free diet would be similar to the proportions seen at Nunnykirk School. I have also observed that as the strictness of the diet increases, so does the number of students who improve. However, the diagnosing professionals are becoming reluctant to differentiate, even between general types of learning disabilities such as dyslexia and dysgraphia. As teachers, we were told that a child had learning disabilities and then, if not specified in the documents we were given, we had to figure out exactly what type of disability they had, then devise or research effective ways of teaching these students. I have done a little of both, but my experience is that this choice varies from one teacher to the next, and one situation to the next. Unfortunately, depending on the individual teacher's workload, teaching background, and personal biases, these children can sometimes be neglected or under-served, a choice that is often dictated by excessive workloads and demands on teachers' time to perform other tasks, especially extensive reporting and supervising sports and other extra-curricular activities.

Please recall the overlap between dyslexia and ADHD mentioned earlier (3), and consider that there are ten reports of connections between attention deficit disorders and celiac disease published in the peer reviewed medical literature. Now, please recall that about 60% of these ADHD children will have dyslexia (3). Since the current, and past issues, of the Diagnostic and Statistical Manual of Mental Disorders, require that ADHD and learning disorders each be differentiated from any medical condition that might be causing the same symptoms and be alleviated by resolution of the medical condition in question. On that basis alone, almost every child being considered for a diagnosis of learning disorders or ADHD should be thoroughly tested for celiac disease and non-celiac gluten sensitivity.

Yet, I would be very surprised to learn that this is commonly being done. Thus, we have a situation in which we are forced to rely upon a study conducted by a group of teachers, in cooperation with parents and students, that was published in The Times (5) and we must take action on our own because, as yet, celiac disease and non-celiac gluten sensitivity are not yet being differentiated from ADHD and/or learning disabilities. The really tragic part of this story is that a gluten-free diet, if started early enough, can reduce or completely eliminate all of these problems with learning disabilities and attention deficits, when gluten is the underlying problem.

If you or your spouse are gluten sensitive, or have celiac disease, do you also have children who struggle in school? Based on the data from Nunnykirk School, current blood tests are probably not sufficient to rule out those who would benefit from a gluten-free diet. For the moment, you may need to institute a trial of a gluten-free diet, as mentioned above, while we await further research in this area. But wouldn't it be valuable for succeeding generations to know, or have a pretty clear idea whether the diet could help? And with what types and/or sub-types of learning disorders? That's where more research could really help. We already know that there is an association between gluten sensitivity and seizure disorders, ataxia and cerebellar degeneration, neuropathy (damage to peripheral nervous system), schizophrenia, depression, migraine, anxiety disorders, autism, multiple sclerosis, myasthenia gravis (an autoimmune neuromuscular disease), and white matter lesions in the brain (11). It should not be surprising if gluten underlies many or most cases of learning disorders and attention deficits. And if research can tell us which cases would be most likely to benefit from the diet, that will be a huge step forward for parents, students, teachers, and government agencies that provide funding for the education of those who are afflicted with these ailments.

In the meantime, we only have the information that we have. So, despite its many weaknesses, the Nunnykirk investigation of dyslexic children argues for experimental implementation, on a trial basis. I would suggest at least a six-months-long period of strict gluten avoidance to determine whether it will help individuals who suffer from dyslexia and/or other learning disabilities.

Sources:
1. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92.
2. Hadjivassiliou M, Grünewald R A, Davies-Jones G A B. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry 2002;72:560-563.
3. Dyslexia Research Institute http://www.dyslexia-add.org/
4. National Resource Center on ADHD http://www.help4adhd.org/about/statistics
5. Blair http://www.thetimes.co.uk/tto/news/uk/article1924736.ece
6. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.
7. Aziz I, Hadjivassiliou M. Coeliac disease: noncoeliac gluten sensitivity--food for thought. Nat Rev Gastroenterol Hepatol. 2014 Jul;11(7):398-9.
8. Shaywitz SE, Shaywitz BA. The Neurobiology of Reading and Dyslexia. Focus on Basics - Connecting Research & Practice, Volume 5,A: Aug. 2001. http://www.ncsall.net/index.html@id=278.html
9. Eicher JD, Powers NR, Miller LL, Mueller KL, Mascheretti S, Marino C, Willcutt EG, DeFries JC, Olson RK, Smith SD, Pennington BF, Tomblin JB, Ring SM, Gruen JR. Characterization of the DYX2 locus on chromosome 6p22 with reading disability, language impairment, and IQ. Hum Genet. 2014 Jul;133(7):869-81.
10. About Education http://specialed.about.com/od/readingliteracy/a/Dyslexia-And-Dysgraphia.htm
11. Jackson JR, Eaton WW, Cascella NG, Fasano A, Kelly DL.Neurologic and psychiatric manifestations of celiac disease and gluten sensitivity. Psychiatr Q. 2012 Mar;83(1):91-102.
12. Diaconu G, Burlea M, Grigore I, Anton DT, Trandafir LM. Celiac disease with neurologic manifestations in children. Rev Med Chir Soc Med Nat Iasi. 2013 Jan-Mar;117(1):88-94. PubMed PMID: 24505898.
13. Niederhofer H. Association of attention-deficit/hyperactivity disorder and celiac disease: a brief report. Prim Care Companion CNS Disord. 2011;13(3). pii: PCC.10br01104PMCID: PMC3184556.
14. Niederhofer H, Pittschieler K. A preliminary investigation of ADHD symptoms in persons with celiac disease. J Atten Disord. 2006 Nov;10(2):200-4.
15. Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6.
16. Kozłowska ZE. [Evaluation of mental status of children with malabsorption syndrome after long-term treatment with gluten-free diet (preliminary report)]. Psychiatr Pol. 1991 Mar-Apr;25(2):130-4. Polish.
17. Diaconu G, Burlea M, Grigore I, Anton DT, Trandafir LM. Celiac disease with neurologic manifestations in children. Rev Med Chir Soc Med Nat Iasi. 2013 Jan-Mar;117(1):88-94. PubMed PMID: 24505898.
18. Niederhofer H. Association of attention-deficit/hyperactivity disorder and celiac disease: a brief report. Prim Care Companion CNS Disord. 2011;13(3). pii: PCC.10br01104. PMCID: PMC3184556.
19. Niederhofer H, Pittschieler K. A preliminary investigation of ADHD symptoms in persons with celiac disease. J Atten Disord. 2006 Nov;10(2):200-4.
20. 4: Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6.
21. Kozłowska ZE. [Evaluation of mental status of children with malabsorption syndrome after long-term treatment with gluten-free diet (preliminary report)]. Psychiatr Pol. 1991 Mar-Apr;25(2):130-4. Polish.

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