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  • Dr. Ron Hoggan, Ed.D.

    Letters to the Editor

      Journal of Gluten Sensitivity Spring 2011 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    Caption: Toronto Star newsroom. Image: CC--Toronto History

    Celiac.com 03/02/2019 - Feedback from readers is increasing.  We are therefore establishing a “letters” column where readers can provide commentary on what they have read or what they consider important to the gluten sensitive community for publication in The Journal of Gluten Sensitivity.  We will choose some of these comments for publication in the journal. 

    Rheumatoid Arthritis and Gliadin Antibodies (Author’s name withheld at their request):

    I purchased and read Dangerous Grains over the Christmas break, and I wanted to say thank you for all of your efforts to share information regarding gluten intolerance.

    Reading your book made me realize what a classic case I am and it made me so sorry that I wasn’t aware it existed sooner. I’ve been anaemic all my life.  I went to a gastroenterologist when I was thirty complaining of severe stomach aches. (I had been eating lots of shredded wheat and drinking orange juice as part of a health kick to try to avoid getting colds that I might pass along to my 3 young children.)   That is probably the closest I’ve ever come to actual celiac symptoms, but the doctor’s response was that I was not that young anymore and may need to avoid eating certain foods, especially spicy ones.  

    I was diagnosed with an underactive thyroid when I was 34.  At the time, I asked the doctor if there were any dietary changes that might help, and he told me no.  I believed that my thyroid problems were inevitable since my mother also had them.  Her whole family has a strong history of allergies, asthma, skin conditions, and diabetes as well as the cancer that killed her and one of her sisters.  

    About 5 or 6 years later, I tested positive for gliadin antibodies and was sent for an endoscopy, which was negative.  I had never heard of celiac disease before that, but fully expected the test to be positive since I thought it might explain the frequent, if not severe, stomach aches I seemed to get.  The endoscopy showed no damage to the villi, and when I expressed surprise the gastroenterologist said I did have a little irritation, maybe some mild gastritis, but definitely not celiac disease.  

    I asked if I should follow the diet anyway, just in case.  He said the diet is very difficult and that there is absolutely no reason to follow it if you don’t have celiac disease.  I remember feeling uneasy about it, and thinking it was odd that I had antibodies against a specific food but it wasn’t a problem.  However, I mistakenly believed that if I had any intolerance to gluten it must obviously be a slight one, and I figured if it really was a problem my digestive symptoms would get worse.  They didn’t.

    I was diagnosed with rheumatoid arthritis last October, and made an appointment with a rheumatologist.  During the 3 weeks I had to wait to get an appointment I spent some time on the Internet trying to understand how I could suddenly have something so awful when I thought I was doing everything I could to take good care of myself.  I googled “anti-gliadin rheumatoid arthritis” and was surprised at how many hits I got.   The first of the most interesting was a paper by Ron Hoggan saying that there is enough anecdotal evidence that every rheumatoid arthritis patient should try going gluten free.   My sister is a nurse who has RA and is on Remicade and Methotrexate, and she was not enthused about the diet idea.  However, my symptoms got so bad that I could barely button my clothes and the pain was keeping me up at night.  The week before the appointment I decided I had to try something.  I found the diet not nearly as difficult as predicted and within a few days the pain was starting to lessen so I could sleep.  

    The rheumatologist was not enthused about the diet idea, and prescribed some strong pain medication even though I told him I wasn’t taking anything for pain and I wanted to avoid it as much as possible to try to heal my stomach - I never went back.  It’s been a little over a year now and although I’m not completely back to normal, I’m close.  I’ve been seeing an MD who treats people with vitamins and supplements for the last 6 months.  

    I plan to get genetic testing done.  Assuming that I have the celiac gene, I want to have my children tested.  I have a son (healthy, although he struggled through school with symptoms of ADD but I never had him tested because we didn’t want to medicate him) and 3 daughters - the oldest has a long history of stomach aches, the second one has asthma, and the third had elevated ANA and was tested for lupus and juvenile rheumatoid arthritis last year around the time I was diagnosed with RA.  Fortunately, her tests came back okay.  I told the pediatric rheumatologist that I had been gluten free for a month at that time and was improving, and that if my daughter tested positive, I wanted to treat her with diet rather than medication.  

    Her response was “why would you ever put that child on a gluten free diet”.  I really wanted to ask why she would ever put a child on Methotrexate and immune suppressants, but figured there was no point.  

    I’m really angry that this information has been available for some time now and I was in the dark for so long - angry at myself for not spending more time doing reading about my health, and at my doctors who were supposed to be experts and handed out useless and misleading information with confidence.  They get such respect in our society, and I don’t care how many body parts and diseases they are able to memorize, if they can’t or won’t look at new information and understand the implications, they aren’t much use to us.  The problem is convincing others of that.  

    Thanks for the paper that gave me hope that maybe there was a better way to treat this than immune suppressant (1, 2, 3).

    1. http://donwiss.com/gluten-free/Hoggan/ra.htm 
    2. https://www.amazon.com/dp/B0090QVTLY 
    3. http://ourgffamily.com/2010/04/nytimes-q-on-gluten-and-gluttony.html/ 

    POST Cereals are Self-Certified as Gluten-Free by Angry Parent in NY (Author’s name withheld at their request):

    The news on Dec. 22 was exciting!  According to a recent announcement by POST  FOODS, their Fruit and Cocoa Pebble cereals are  “Certified as Gluten Free”. The press release states, “In response to increased concerns over celiac disease and products containing wheat gluten, the brand went through a rigorous process to achieve Gluten Free status on both Fruity and Cocoa Pebbles products.”

    This is great! My son is going to be excited to have Pebbles cereal.  As a parent of a sensitive celiac child, I am very careful about the products I feed to him. I trust products that have third party gluten-free certification because I know those products have to meet stricter standards than those set by the FDA. Once in a while, a special treat in the form of a cereal like Pebbles would be a nice treat for my son.

    I thought that congratulations were in order for the certifying agency.  But when I congratulated the Gluten-Free Certification Organization, I was told they did not work with POST. Something wasn’t right.  I could not find out who had certified POST cereals. I am part of a parents group for celiac children and we wanted to thank the organization that made this happen. So we wrote to POST to thank them for certifying their products and to ask who they were working with for their gluten free certification.

    Jennifer Brain-Mennes, Director of Media and Public Relations for POST made the following reply: “Post followed a gluten free validation procedure that included certification from all ingredient suppliers, outside laboratory testing of all ingredients, testing the production line, and outside laboratory testing of the finished product.  In addition, Post has instituted process controls to ensure there is no cross-contact with gluten containing products.  We do not have third party verification symbols on the product boxes.” 

    I was upset when I saw this response from POST. I felt cheated by this cereal giant. The same thing happened when Betty Crocker launched their gluten-free mixes. It was very clear that General Mills, their parent company, knew the market potential and their press releases made it sound like they cared more about potential profits and little about my family or me. Now POST has joined in, only POST must also have seen reports that celiacs trust gluten-free certification so they used those words in their advertising.  I was excited about giving my son Fruity Pebbles, but now I am not so sure I want to risk it. I was convinced POST was thinking about the celiac children until I saw the response from Ms. Brain-Mennes. Now I feel duped and I don’t trust them. POST tried to gain my trust by feeding me the words I want to hear “certified as gluten-free”.  Our little group of parents was also confused by this. We heard another parent got a similar letter in response to the certified Pebbles.

    He shared the letter he wrote and the response he got from POST:

    While I deeply appreciate these steps to make sure that your cereals are gluten free, your use of the word certification is confusing and misleading to consumers with gluten intolerance and celiac disease.

     Certification is interpreted by consumers as an indication that an independent third party has reviewed the facility, production procedures and ingredients. You wouldn’t write that a product is certified organic if you didn’t have independent certification. The gluten free certification procedures and standards from an independent group like The Gluten Free Certification Organization run by the Gluten Intolerance Group of North America is clearly detailed on their web site: http://www.gfco.org 

    Although your use of the word certification in your press release should be corrected and withdrawn, I would encourage Post to consider another path - adopting independent certification. To give you an indication of consumers of gluten free products view of independently certified products Vs. manufacturers’ own gluten free claims, I have copied some recent comments from the Gluten Intolerance Group of North America Facebook page. Gluten free consumers are very savvy shoppers who spend many hours every week reading labels and calling food companies to ensure that they are avoiding gluten. As you can see, they recognize and deeply appreciate the value of independent certification.  [Gluten Intolerance Group Face Book quotes inserted].

    Thanks again for your response. (Eric, NY) 

    POST RESPONSE:
    “Post stands by its statement and had implemented rigorous procedures and testing to insure our Pebbles products are gluten free.  Thank you for your inquiry, we value our consumer feedback.”

    Clearly POST knows celiacs trust the words “Certified Gluten Free”. Even though they have implemented the processes that should keep their products safe, they have not revealed what their testing standard is. And since the FDA has no definition of gluten free, I don’t know if I can trust this product any more than I can trust others who are jumping at the chance to add gluten-free to their label and make a buck.  Gluten Free is everywhere and continues to grow. I have heard that when the big companies are labeling gluten-free, the price of gluten-free food will come down. The way that POST is going about advertising the Pebbles as being certified as gluten free makes me angry. They are lining their pockets at the expense of my trust and possibly my child’s health. For me, this announcement by POST bends the truth quite a lot – to the point where it appears to be deceptive advertising. I don’t think we should support products or companies that use this type of misleading advertising. I wonder if the Federal Trade Commission would agree with me that this is not truth in advertising.  



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  • About Me

    As co-author of "Dangerous Grains" and "Cereal Killers", the study of the impact of gluten continues to be a driving passion in my life. I am fascinated by the way that gluten induces illness and impedes learning while it alters mood, behavior, and a host of other facets of our existence. Sure, the impact of gluten on health is an important issue, but that is only the most obvious area of impact. Mood disturbances, learning disabilities, and the loss of quality of life due to psychiatric and neurological illness are even more tragic than the plethora of physical ailments that are caused or worsened by gluten. The further I go down this rabbit hole, the more I realize that grains are a good food for ruminants - not people. I am a retired school teacher. Over the last decade, I have done some college and university level teaching, but the bulk of my teaching career was spent working with high school students. My Web page is: www.DangerousGrains.com

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    Jefferson Adams
    Celiac.com 01/08/2016 - Adults with both celiac disease and type 1 diabetes face an increased risk of developing thyroid disease, according to a new study.
    The study was done by researchers Matthew Kurien, Kaziwe Mollazadegan, David S. Sanders and Jonas F. Ludvigsson. They are variously affiliated with the Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield, U.K., the Academic Unit of Gastroenterology at the University of Sheffield in Sheffield, U.K., the Department of Medical Epidemiology and Biostatistics at Karolinska Institutet in Stockholm, Sweden, and the Department of Pediatrics of Örebro University Hospital at Örebro University in Örebro, Sweden.
    For their population-based cohort study, Dr. Kurien and colleagues analyzed data from Swedish National Patient Register between 1964 and 2009. 
    Their team identified all 42,539 patients diagnosed with type 1 diabetes before age 31 years of age. They used small intestinal biopsy reports showing villous atrophy to identify 947 type 1 diabetes patients with celiac disease between 1969 and 2008 (55.1% women; mean age of celiac disease diagnosis, 12 years).
    The research team then selected up to five type 1 diabetes patients as controls for each patient with both type 1 diabetes and celiac disease, and matched them for age, sex and birth year. They selected 4,584 in all; 54.5% women. They then used Cox regression analysis to calculate hazard ratios for future thyroid disease, with celiac disease as a time-dependent variable.
    They found that, over an average 13 years of follow-up, 90 patients in the group with both type 1 diabetes and celiac disease developed autoimmune thyroid disease (either hypothyroid or hyperthyroid); with an average age at thyroid disease diagnosis of 25 years old.
    In total, nearly 11% of patients in the type 1 diabetes and celiac disease group were diagnosed with thyroid disease at some stage of life vs. 7.2% of patients with type 1 diabetes without celiac disease.
    Patients with both type 1 diabetes and celiac disease faced an increased risk for hypothyreosis (HR = 1.66; 95% CI, 1.3-2.12) and hyperthyreosis (HR = 1.71; 95% CI, 0.95-3.11). The RR for thyroid disease in patients with both type 1 diabetes and celiac disease was 1.67 (95% CI, 1.32-2.11).
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    Diabetes Care. 2015. doi:10.2337/dc15-2117.

    Tony Allen, B.Sc., B.Ed.
    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).
    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.
    Sources:
    http://rosecole.com/old/articles/fat-loss/enhance-athletic-performance-go-gluten-wheat-free.html Alexandra Blair. Wheat-free diet gives food for thought. http://www.timesonline.co.uk/tol/news/uk/article444290.ece Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. (1996). Does cryptic gluten sensitivity play a part in neurological illness? Lancet. Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 02/13/2017 - Researchers have noted a strong clinical association between autoimmune thyroid disease and adult celiac disease. In part, at least, this appears to be related to common genetically-based determinants as well as a common embryonic origin since the fetal thyroid is derived from the pharyngeal gut.
    Dr. Hugh J Freeman of the Department of Medicine, Gastroenterology, at the University of British Columbia in Vancouver, BC, Canada recently set out to review evidence from earlier prevalence studies and recent population-based studies.
    Specific phenotypic features have been described if both disorders are defined, including dermatitis herpetiformis, and a greater risk for a malignant complication, including lymphoma, especially if celiac disease is initially diagnosed at a late age. Some phenotypic characteristics of autoimmune thyroid disease, such as orbitopathy, may be an important clue to occult celiac disease.
    Similarly, patients requiring a high thyroxine dose to treat their autoimmune thyroid disease may reflect another aspect of undetected celiac disease.
    In some studies, the relationship has also been extended to other phenotypic features, such as dermatitis herpetiformis, and a greater risk of malignant complication, especially if celiac disease is detected in late or elderly age groups. In addition, some phenotypic characteristics of thyroid disease, such as orbitopathy and a high dose requirement for replacement may be added clinical clues to occult or undetected celiac disease.
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    Source:
    International Journal of Celiac Disease. Vol. 4, No. 4, 2016, pp 121-123. doi: 10.12691/ijcd-4-4-6

    Scott Adams
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    Although there is no disagreement that Mr. Oliver's recipes are indeed gluten-free, a judge and jury may need to decide whether or not he is violating their trademark by using a similar graphic on his recipes.
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    The GIG has asked Mr. Oliver to stop using his 'gluten-free' online labels, and will seek monetary damages in court if he does not comply.
    Source:
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    Doritos does make a few gluten-free versions.     
    Just wanted to chime in. During my 2 plus years of healing I had joint pain and muscle pain with some of the nightshade mainly peppers and tomato. I stopped them. I can now eat them again. My theory is when my gut gets cc my holey gut dumps some of my food in my blood stream and my already ticked off immune system let's me know what is allowed. Apparently for a time nightshades  of potato, tomatos, and peppers were an issue. I was able to gradually introduce potatoes first and then tomatos, then
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