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The Coach's Educational Journey

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

Celiac.com 07/12/2016 - Late in 1998 after discussions with a colleague, who later became my mentor in this field, some loud bells started to ring inside my head as we talked about this little-known (to me at least) condition called celiac disease, an autoimmune disease, as well as non celiac gluten sensitivity. Both of these ailments are triggered by a family of dietary proteins called gluten. Of course, I had been following eating practices based on commonly held beliefs about wheat as the "staff of life" and doing things that were taught to me as 'scientifically accurate'. Yet talking with my colleague, I kept getting answers that implicated this nutritional food group for a myriad of problems that I'd had for as long as I could remember.

Hearing about these ailments caused by gluten, I started connecting some of my own experiences with the signs and symptoms he was talking about, especially in relation to my journey through the education system. Physical and behavioral problems had plagued my educational life, making it a disaster. I worked with various educational specialists, from the very beginning, yet they did not seem to be able to help me much. I couldn't maintain a pace of learning that was even remotely close to that of my peers, in most of my scholastic endeavors. As my self-esteem dropped, my behavior worsened. I found myself increasingly being removed from classes and from schools. I sometimes thought that if I heard the words "he just does not apply himself" one more time, I would spontaneously explode. That being said, I am still very thankful for some compassionate, caring teachers and coaches who saw through all my issues and stayed committed trying to help me muddle through and keep moving along in my educational journey.

As a high school athletics coach and teacher of Health and Physical Education, now, I often find myself offering dietary concepts and information to students and colleagues that is at odds with what I learned at university just over 20 years ago. And the misinformation I learned is still commonly being touted, even today. Admittedly, research in the field of Nutrition has undergone some dramatic changes over the last two decades, but what I'm talking about is a more fundamental shift in thinking about what we eat and whether it will promote optimum athletic performance, protection from disease, longevity, and a healthy body composition that is more in line with wellness.

For instance, I was taught that carbohydrates are the preferred fuel for our muscles, and that carbing-up prior to an athletic event is an effective and desirable strategy. I was also taught that weight loss could be achieved through increased physical activity. I now view these issues very differently. Athletic performance is often enhanced by avoiding many of the foods, such as gluten and sugar, that I was taught to value. Today, I am constantly seeing articles or interviews about high performance athletes who have left the old nutrition paradigm behind and are having great success and increased career longevity in their chosen field. Novak Djokovic is one prominent example where the underlying problem was celiac disease. Vande Velde and Tom Danielson are two professional cyclists who also report performance increases from a gluten-free diet (1). Such a shift in eating can also, especially among young people, remove or reduce learning disabilities as reported by one school that works only with children who struggle with dyslexia (2).

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Conventional thinkers seem to believe that these benefits have something to do with improved nutrient absorption. However, they may come from enhanced nerve conduction or function. After all, Marios Hadjivassiliou and his colleagues at the Royal Hallamshire Hospital at the University of Sheffield have long been reporting that gluten, even in the absence of celiac disease, is responsible for a large portion of neurological ailments of unknown origin (3). Or the improvements may come from something entirely different. But wherever the improved performance and health are coming from, the gluten-free diet seems to be a great starting place.

For instance, a former student, C.W., who has given his permission for me to talk about his case, experienced dramatic changes on a gluten-free and dairy free diet. Already an accomplished athlete, C.W. had also struggled for years with serious academic problems. He struggled with his reading and his writing and was still functioning at the level of an elementary student. A colleague and I recommended that C.W. try this diet to hone his fitness. Not only did he enhance his athletic performance, his reading skills improved abruptly and dramatically. Both his comprehension and his reading speed increased significantly over just a few months. Before he had been on the diet a full year, he was reading novels for pleasure. This was a far cry from his prior brushes with reading, where he was often unable to remember what was said in a sentence he had just finished reading. Certainly, by the end of a paragraph he was previously unable to say how it had begun. Now, he is reading novels, enjoying the experience, and he remembers them well enough to be able to talk, in detail, about the story.

My own experience with the gluten-free diet has not produced such rapid results, at least regarding my reading and writing. I certainly felt healthier very quickly, and found it much easier to have a leaner body composition. Many of my minor physical complaints also disappeared, but it has taken years for my struggles with reading to diminish. Today, I am able to read highly technical reports from the peer reviewed medical and nutritional literature. I also find myself reading large, technical books about nutrition and other health issues. I read them cover-to-cover, and I understand most of what I read.

My writing is also improving gradually. There is no question in my mind that the gluten-free diet has helped me enormously in these areas, although much more slowly than they helped C.W. Neither do I know how many other children that a gluten-free diet could help. I can only say that if you or someone close to you experiences a learning disability or unexplained gastro intentional issues or withdrawal symptoms when trying to eliminate wheat for a short time, it would be very worthwhile to follow a strict gluten-free diet for six months.

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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.