Top 20 Things You Should Know About the Impact of Gluten (from Ron Hoggan, Ed.D.)

March 8, 2010 · Filed Under diagnosis, discussion, gluten free · 31 Comments

Today I have the distinct pleasure of sharing a guest post from Ron Hoggan. Ron was the guest speaker at my support group’s annual open house back in November. He currently lives on Vancouver Island (and previously many years in Calgary) and my group is in Virginia, but we “Skyped” him in. I have the utmost respect for everything Ron Hoggan has done for awareness regarding celiac and all gluten issues. Everyone in attendance at the open house was both impressed by and grateful for his presentation, The Many Faces of Gluten-Induced Illness. They were especially appreciative of the very informative question & answer session afterwards.

Here’s some additional information on Ron Hoggan. He has a doctorate in education. His ongoing research explores the impact of gluten consumption on school readiness, behavioral function, cognitive function, and learning disabilities. A retired high school teacher, Ron continues to pursue peer-reviewed research and publication. He is the editor of the Journal of Gluten Sensitivity and the author of the books, Dangerous Grains and The Iron Edge. Ron has also written many articles for the popular media about dietary interventions. He will soon begin teaching continuing education classes at the college-level: one class will be on the psychological/psychiatric impact of gluten consumption, and the other is about reversing Type 2 diabetes and metabolic syndrome.

I’ve been a fan of Ron Hoggan’s since I was first diagnosed as gluten intolerant in 2003. Among my homework assignments from my doctor was one to read Ron’s first book, Dangerous Grains. I read it immediately. For someone like myself who has suffered from various symptoms and conditions as far back as I could remember, this book read like a suspense novel—a page turner that inspired feelings of surprise, validation, excitement, and anxiety (among others). I have suggested this book to many since.

I became much more of a fan of Ron’s after he responded to a query of mine on the Celiac Listserv. As I was thanking him for his reply, I got the idea to ask him about speaking at our group’s fifth anniversary open house. Keep in mind that Ron and I had never met or even spoken before this email exchange, but he readily agreed to speak to my group. Soon we were talking via email, testing Skype, and running dry runs of his presentation to test out the equipment at the facility where the open house was being held. There were a few glitches here and there, for sure, but Ron was unflappable. I’m convinced his friendly and adaptable nature is helping him be an effective messenger for awareness of celiac and other gluten-related illnesses, as much as the validity of the content he shares. And, after working with Ron on our open house, I’m even more of a fan of his.

I am also a subscriber of the Journal of Gluten Sensitivity, which Ron edits. (Some of you may recognize that publication better when I tell you that it’s the publication associated with celiac.com.) It’s really an excellent publication. The articles, many of which are written by Ron himself, are always well-researched, diverse in their subject matter, and compelling. They are usually written by well-known spokespeople in the gluten-free community. (For example, my good friend and fellow blogger, Melissa McLean Jory, the author of Gluten Free for Good, has written nutritional articles for the Journal of Gluten Sensitivity.)

Rather than try to summarize Ron’s work, I asked him to share 20 things we should know about gluten’s effects. I was so appreciative when he emailed his listing in less than 24 hours. Courtesy of Ron Hoggan, here is the Top 20 list for my gfe readers. (Note that definitions for bolded terms are shown at the end of the listing.)

Top 20 Things You Should Know About the Impact of Gluten (in no specific order)

1. Gluten can be undermining your health without any symptoms.

2. Gluten often underlies autoimmunity through inciting excessive zonulin production – 80% of the human population produces zonulin which develops into haptaglobin 2.

3. Replacing gluten with other highly glycemic, highly processed “replacement” foods is not the path to optimal nutrition.

4. Gluten can have a dramatic impact on psychological wellness and may be at the root of many cases of schizophrenia and bipolar disorder.

5. Gluten can interfere with children’s academic performance and school readiness.

6. The stricter the GF diet, the greater the potential benefit.

7. Gluten is highly addictive through the opioid peptides it contains and the excessive zonulin production it incites. Zonulin allows these opioids access to the bloodstream and the brain.

8. Grains are highly glycemic and aren’t a healthy food for anyone.

9. Gluten-induced illness can take many forms, including more than 200 diseases, syndromes, and conditions.

10 Gluten can contribute to the onset and development of a variety of cancers.

11. It is not a sacrifice to give up gluten. It is a gift to understand the need to give it up.

12. Osteoporosis can be reversed when it is caused by gluten.

13. Neurological disease is often caused or exacerbated by gluten.

14. Dementia, when driven by gluten, can be reversed with a gluten-free diet.

15. Wheat germ agglutinin can bypass tight epithelial junctions even in the absence of gluten sensitivity or celiac disease.

16. A variety of human tissues are damaged just from direct exposure to gluten in a Petri dish.

17. Our digestive tracts lack the length, enzymes, and other features that would signal human adaptation to eating grains.

18. Skeletal remains of people who adopted grain agriculture show that they are shorter in stature and have abnormal bone structures suggesting nutrient deficiencies.

19. Depression is the most common symptom of celiac disease.

20. Avoiding gluten just makes good sense for anyone who isn’t starving.

21. A brief trial of a gluten-free diet can’t hurt, and the harder it is to follow the diet, the more likely you need to avoid gluten.

–Zonulin is a protein that participates in tight junctions between cells of the wall of the digestive tract. Initially discovered in 2000 as the target of zonula occludens toxin, secreted by cholera pathogen Vibrio cholerae, it has been implicated in the pathogenesis of coeliac disease and diabetes mellitus type 1. (Wikipedia)

–”Haptoglobin is a molecule that has been known to scientists for many years. It was identified as a marker of inflammation in the body. Haptoglobin 1 is the original form of the haptoglobin molecule, and scientists believe it evolved 800 million years ago. Haptoglobin 2 is a permutation found only in humans.” Science Daily Sept 7, 2009. Dr. Alessio Fasano has stated that only about 80% of humans have haptoglobin 2. The other 20% are therefore safe from developing autoimmune diseases, just as other primates are.

–An opioid is a chemical that works by binding to opioid receptors, which are found principally in the central nervous system and the gastrointestinal tract. The receptors in these two organ systems mediate both the beneficial effects and the side effects of opioids.

The analgesic effects of opioids are due to decreased perception of pain and decreased reaction to pain, as well as increased pain tolerance. The side effects of opioids include sedation, respiratory depression, and constipation. Opioids can cause cough suppression, which can be both an indication for opioid administration or an unintended side effect. Physical dependence can develop with ongoing administration of opioids, leading to a withdrawal syndrome with abrupt discontinuation. Opioids can produce a feeling of euphoria, and this effect, coupled with physical dependence, can lead to recreational use of opioids by many individuals.

Although the term opiate is often used as a synonym for opioid, the term is more properly limited to the natural alkaloids found in the resin of the opium poppy and, more loosely, the semi-synthetic opioids derived from them. (Wikipedia)

–Agglutinin is “a substance that will cause a clumping of particles such as bacteria or erythrocytes. Of major importance are the specific or immune agglutinins, which are antibodies that will agglutinate bacteria containing the corresponding antigens on their surfaces.” (Sci-Tech Encyclopedia)

–Epithelial – In biology and medicine, an epithelium is a tissue composed of cells that line the cavities and surfaces of structures throughout the body. (wikipedia) The epithelial cells that line the intestines form a single layer that acts as a barrier between the gut and the bloodstream. The barrier function of the tight junctions between these cells is critical to our protection from the “outside” world, from which we selectively absorb valuable nutrients while blocking the absorption of larger molecules that can be very harmful.

Ron Hoggan, Ed.D.

I hope you will consider this top 20 listing from Ron in reference to your own health and share this listing with others as well. If you’d like to learn more, I’m hosting a giveaway of several of Ron’s books and videos. Just click over to my Out and About page to enter.

Shirley
Not just gf, but gfe!

Tags: diagnosis, gluten free, symptoms

Giveaway of Educational Publications by Ron Hoggan, Ed.D.

March 8, 2010 · Filed Under Out and About, diagnosis, discussion, giveaway, gluten free · 52 Comments

After Ron Hoggan, Ed.D., spoke to my support group in November, he donated some of his educational materials on the effects of gluten. (You can read more on Ron and 20 Things You Should Know About the Impact of Gluten here.) Ron said that I could use his donated materials as I wished. I gave some away via a drawing at my subsequent support group meeting. I added another set to our group’s library. Still one copy of his book, The Iron Edge, and two copies of his video, Smarten Up! (How Gluten Grains Impede Learning and Behavior), are in my possession, so I am offering them up for a giveaway. In addition, I am purchasing two copies of Dangerous Grains to add to this giveaway.

The Iron Edge examines iron deficiency; its effect on learning, memory and health; the necessary tests; and how to resolve iron deficiency naturally.

Smarten Up! is a compilation of videotaped excerpts of Ron Hoggan’s presentations showing how gluten-containing grains are detrimental to learning in humans. Admittedly, the technical quality of this video is not the best, but the content is top notch. In fact, the support group member who won this video just shared with me how surprised she was at the information Ron shared on gluten’s impact on learning.

Dangerous Grains shares case histories—including Ron Hoggan’s own and that of his family members—and over 200 symptoms and conditions related to gluten. It truly is eye opening.

I’m really excited about sharing these very informative materials. There will be five winners. Frankly, I think this is my best giveaway yet. Knowledge really is power, and, as such, knowledge can be transformational.

This giveaway will end Sunday, March 14, at 9:00 PM Eastern. You can enter the giveaway by just leaving a comment. The other ways listed are for additional entries, but are not required. But, I’m so excited to share these materials with my gfe readers that I hope you will spread the word!

1. Leave a comment below and please tell me if you have a preference on which item you’d like to receive (I’ll try to oblige).
2. Tweet about the giveaway sharing the link and leave a comment saying that you did.
3. Post a message on your Facebook page about the giveaway and leave a comment saying that you did.
4. Post about the giveaway on your blog and leave a comment saying that you did with your link.

All entries will be tracked by the individual comments, so you must enter a separate comment to get an additional entry. One comment showing you did all these things will only be counted as one entry, so please remember to note each by separate entries.

Truth be told, if I had my way, I’d be handing out one of each of these valuable educational items to every possible person in the world, but alas I must stick with this number. So, best of luck to all!

Shirley
Not just gf, but gfe!

Tags: diagnosis, giveaway, gluten free

Educate, Not Eviscerate

September 5, 2009 · Filed Under diagnosis, discussion, gluten free, travel · 20 Comments

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Remember when you first went gluten free, either because of a diagnosis from a medical professional or because you decided it was best for your health? Remember how overwhelmed you felt? You may have felt totally clueless at first. It’s possible you’d never even heard the term “gluten” before you had to go gluten free. Or, if you had, it had been in regard to someone else’s need to go gluten free and you’d had a vague idea, but you hadn’t really gotten it. Now fast forward a few weeks after you’d gone gluten free, you go into a grocery store or a restaurant and you start talking to a clerk or a server about gluten free. In return, you get what we Southerners call “the deer in the headlights look” or you get responses like “that bread is okay for you—it’s white bread”; “the cook says we don’t serve gluten anymore”; and “there’s no glucose in that dish.” You may feel your blood pressure rise and you may get huffy or raise your voice with the staff annoyed with their ignorance. Next thing you know you may be marching out of the establishment, you’re calling all your friends going on and on about what idiots these people are, you’re blogging about the horrid experience, tweeting about it, posting a little rant on Facebook about the “stupid” waitress who served you, and the like—basically, indicating that you’d like to rip this ignorant person to shreds. Hmmm. Now remember just a short while earlier you didn’t know what gluten was yourself. You had no idea what cross contamination meant. You may have even been one who thought that only wheat bread contained wheat, that white bread was … well, white bread was something else. But now maybe you’re an expert and/or a victim, and … maybe one an attitude.

The fact is that many people eat the Standard American Diet (SAD—great mnemonic there for sure), which is heavenly laden with processed foods. Most are not taught to even consider what is in their “food.” The fact that you are reading this probably means that’s not the case now, but it could have been at one time. Most folks just look at labels for calories and fat grams, if that, and nothing else. And, as a society, we’ve gone so far over on that processed food spectrum, that it’s unbelievable really. (If you want to read more on these topics and the impact to our health, I suggest reading Michael Pollan’s book, In Defense of Food. It’s on my Books page. Pollan covers these topics very well.) Frequently, new readers find their way to gfe from online searches to find out if food items like bananas, brown sugar, mushrooms, and honey are gluten free. Of course, they are gluten free (no wheat, rye, barley, on contaminated oats in those foods), but the point is many of us don’t know what’s what when it comes to our food any more. The products that are generally being consumed are so far removed from actual food. I mean we have a plethora of food scientists now for goodness sake. They work for major food corporations creating new products daily that will make you want to consume more and more. Read the gobbledy gook on some packaging and you’ll see how far we’ve come from what I always refer to as “real” food, most call “whole food,” and what Michael Pollan defines as what your great-grandmother would recognize as food. Think back on that one for a moment. How many things in your pantry, refrigerator, or freezer would great-grandma recognize? What she would recognize as food is what we want to be eating, but, really people in general have come to accept terms like carageenan, maltodextrin, polysorbate 60, disodium EDTA (preservative), monosodium glutamate, and the ubiquitous high fructose corn syrup. They probably have no idea what those terms constitute, but they don’t give them a second thought. So, your food staff personnel really might not have a clue on “what’s what” when it comes to the food they are serving. I’m not saying that’s a good thing at all, but it is often reality.

But, my point is why do some of us choose to vilify folks rather than educate them and work with them? Oh, I get the frustration part. All of us who are gluten free (and many perhaps eating a more restrictive diet than that for health reasons) deal with the frustration of dealing with uninformed food service personnel and sometimes you do want to bang your head against a wall for a few moments—particularly if you’ve had several bad experiences back to back. And, of course, I get the concern for our safety. If you’re like me, you will not knowingly, intentionally eat gluten. You know the ramifications and they are not pretty, whether you have immediate, outward symptoms or not. (Remember: If you have a gluten issue, any gluten ingested damages your body. And, please don’t tell me that you still eat gluten in small amounts occasionally and your follow-up testing is normal. Studies and clinical casework have shown that it can take a long time for the blood testing to show that damage is being done. But, that’s a subject for another day.) And, I get that you want to pass the word on to others to help them know which establishments understand the gluten-free diet and which ones don’t. But, isn’t there some middle ground here? Will treating uneducated personnel badly, berating them, and making demands cause establishments to be more gluten savvy and serve you better? I don’t think so. And, what do our attacks or ugliness do to the individual they are directed at? Would you want to help someone who has treated you that way? These are human beings we’re dealing with … folks just like you and me, but just not “up” on their gluten knowledge … yet.

The fact is that we’re all ignorant (i.e., uninformed) on different subjects. You may know all about the Paleolithic Era; the closest I might get to knowledge of that time period is seeing the cavemen on the Geico commercials. I may know how to converse in five languages … you may bungle your way through ordering off the menu at the Mexican restaurant. The urbanite travels via subway like breathing, but may not know how to actually drive a car. Conversely, the country dweller might have no knowledge of the subway, but could certainly take the urbanite on a fine Sunday drive pointing out local landmarks in the family sedan. We all have our areas of expertise and our areas of ignorance. That’s life. We just can’t know it all and we just don’t have an interest in all subjects (or at least not all the time). I like to think it’s a good thing because there’s always something to learn and always a new connection or interest that leads us on the next quest for knowledge. And, with 97% of individuals with celiac still undiagnosed, it’s clear that physicians who’ve had years of medical training don’t “get” this condition, why on earth would we everyone else to “know”? Many times when patients are diagnosed with celiac/gluten intolerance, they are sent out the door with a referral to a nutritionist/dietitian. While that can be a perfectly fine practice, it indicates these doctors don’t know about eating gluten free either. Yet, we expect the restaurant personnel to be “up” on gluten. It doesn’t quite seem reasonable in that light, does it? Yes, I know that there are restaurants that participate in gluten-free awareness and safe eating programs. They advertise as gluten free and their personnel must go through mandatory training on their gluten-free menu and safe practices. I get that. But, even if we encounter problems with eating gluten free safely at those particular establishments (and I have several times), which approach best serves our purpose? Education or evisceration? How will you feel after you’ve stamped your feet, huffed out the door, and later raked the personnel and the establishment over the coals? Behaving this way is not empowerment, and I really don’t think that your server or manager will rush to come up to speed on gluten after you left … they’ll just be immensely relieved you’re gone. Follow-on negative publicity is not likely to inspire positive action either. Unfortunately, it is very likely that the individual and the management will have a very wary, if not very negative, reaction to the next person who walks through the door and mentions gluten. The outcome may be that they just state that they can’t serve you safely (we see this a lot with products I believe), even though they may have some perfectly safe gluten-free options. We don’t serve ourselves well by being “put upon” victims in these scenarios and we are not encouraging gluten education and improvement of the overall situation.

Now, to be clear, I have been very frustrated myself at dining situations, but for me, it’s not a lack of knowledge that gets me riled up. It’s when folks dismiss my needs or don’t want to learn the basics to help me eat safely. I started feeling ill after eating my appetizer in a very fine restaurant once (after doing my usual amount of quizzing with the server and the chef on dishes that looked safe). The chef came out and was clearly annoyed that I had been re-questioning the server about the gluten-free status of my dish. He stated there was no gluten in my dish (looking at me like I was one of those people). Then he suggested that I have the crab cakes instead because they were made from Panko breadcrumbs. I was shocked because this information was incorrect, and I’m sure it showed on my face (I am one of those people—no poker face here), but I still managed to tell him politely that Panko breadcrumbs were not gluten free. He told me they were gluten free because the restaurant’s consulting nutritionist had told him they were. By this time he was clearly irritated with me and very curt and dismissive, and I was vexed. No, I was more than vexed, and it was clear he was not interested in being educated. He was already certain he (and the consulting nutritionist) knew it all. I think for just a moment or two as I talked to him I could imagine my head spinning around like Linda Blair’s character in The Exorcist. Really, I was appalled at his lack of knowledge and his very poor attitude. I expect chefs with professional training to know not only how to make food, but to know what’s in each dish they’ve prepared and which ingredients constitute allergens (including gluten). I maintained my cool; however, I did not eat another mouthful of food there because I had no confidence anything was safe. I would have far preferred an educational exchange, but it just was not happening that time. Unfortunately, I did not feel that any further attempts at education would be welcomed or heeded.

However, an experience on our recent trip is the type of situation I have in mind when I recommend educating, not eviscerating. At one B&B we stayed at, we were the only couple who had stayed overnight. The young lady cooking breakfast said she’d cook anything we’d liked. She was not a trained chef or even the regular cook; she was just a member of the staff who’d been asked to pull kitchen duty. She told us she could make French toast for us if we’d like. Then I reminded her that I could not eat gluten: wheat, rye, barley, and oats. Then she said “I’ll use white bread.” I told her nicely that white bread is still made from flour, which is all ground from wheat, unless it’s special, gluten-free flour like rice flour. She was very surprised. Finally after some discussion (during which she seemed genuinely interested in learning about gluten and feeding me safely), we decided that she could make scrambled eggs and bacon for me. (Mr. GFE ordered the same to eliminate the cross-contamination concern between our two dishes.) We talked about using a clean pan, clean utensils, keeping other gluten-containing foods away from the prep area, etc. But, then she came back with a bowl of fruit with lovely, but gluten-containing muffins positioned all around the edge. I informed her, again nicely, that with celiac/gluten intolerance one couldn’t eat anything that has been touched by food containing gluten. She was very apologetic and still interested in learning more about the diet and how one knows one should be eating gluten free. Because she didn’t have any other guests to wait on, she chatted with us for quite some time about the ins and outs of eating gluten free and the symptoms of gluten issues.

The fact that the B&B’s stand-in cook/server made a mistake placing the muffins on the fruit did not upset me terribly. Certainly, I didn’t eat any of that food, but if you could “get” the gluten-free diet that quickly, well, we wouldn’t have gone through the learning curves we all did, right? But, talking to folks in food service and answering their questions is the type of education that I am talking about. Maybe you’re thinking why would anyone want to do that or who has the time? Well, first, why wouldn’t you want to do it? What harm is it to talk to people and educate them and, thereby, help the next gluten-free person down the road, or perhaps help your server see that they or a friend/family member could have gluten issues? And, frankly, life is nothing if not about connections with people … even the usually brief exchange that takes place between the guest and the server. And, what else were you doing anyway? This is important stuff. Personally I believe that all of us who have gluten issues have a responsibility to educate and help others in regard to determining if they have gluten issues and showing food service personnel how to serve food gluten free and how to eat gluten free. It really doesn’t have to take very long to implement this approach—numerous kind, patient conversations here and there. We learn better in short spurts anyway … who can take it all in at once? If you’re one who is a bit shy about this type of thing, gluten-free dining cards like the ones Triumph makes can be helpful.

The gfe thinking comes into play here, too. If you show establishments and their staff members how to feed you safely with resources on hand or without having to buy tons of specialty products that are costly or may go bad quickly, they will be much more willing to do so. Sometimes you might be the one who lets them know that a particular dish of theirs is gluten free if you confirm with them that the ingredients are gluten free and it’s free of cross contamination. Suggesting that they keep a gluten-free flour mix or almond flour in their freezer as a breading option, reminding them that safe brands of cornmeal can be used in many dishes, suggesting having corn tortillas on hand as an alternative to flour tortillas, talking to them about cross contamination, etc., can all go a long way in giving them and the gluten-free customer more options. You can also recommend existing training programs designed to teach them how to serve gluten-free food and attract customers, such as the National Foundation for Celiac Awareness (NFCA) Gluten-free Resource Education and Awareness Training (GREAT) program or the Gluten Intolerance Group’s Gluten Free Restaurant Awareness Program (GFRAP). (I’ve actually printed out information on these programs and shared them with food service management and chefs before. They have been appreciative—especially when they realized that being labeled a gluten-free restaurant through reputable sources will bring them additional customers and revenue. Gluten-free diners who have eaten safely will return to the establishment—in fact, we are a very loyal bunch.)

There are really very few occasions when we can’t follow the education approach. Pete of No Gluten, No Problem just did a post the other day on the “teachable moment“ for sharing this type of information. As he pointed out, sometimes, the moment presented is not a teachable one due to situational circumstances. Then, we just do the best we can to get safe gluten-free food without teaching a gluten lesson. But, there are actually many, many times when we can educate staff members on helping us eat gluten free safely and very well. Not only has this approach ensured that I have eaten safely at many places over the years, but sometimes it’s helped food service personnel see their own issues regarding gluten and inspire them to get tested. It’s also brought me new friends and new readers, and for that as well, I am very grateful!

Shirley
Not just gf, but gfe!