 in people afflicted with celiac disease. The response harms the intestinal lining and impairs the body's absorption of nutrients. Chronic exposure to those foods can also lead to cancer and other ill effects in such individuals.)
Foods containing wheat, rye or barley trigger an autoimmune reaction (against the body's own tissues) in people afflicted with celiac disease. The response harms the intestinal lining and impairs the body's absorption of nutrients. Chronic exposure to those foods can also lead to cancer and other ill effects in such individuals.
Image: JupiterImages (photograph); Jen Christiansen (photoillustration)
In Brief
- Celiac disease (CD) is an autoimmune disorder triggered by ingestion of gluten, a major protein in wheat, or of related proteins in other grains.
- Research into the root causes indicates that the disorder develops when a person exposed to gluten also has a genetic susceptibility to CD and an unusually permeable intestinal wall.
- Surprisingly, essentially the same trio—an environmental trigger, a genetic susceptibility and a “leaky gut”—seems to underlie other autoimmune disorders as well. This finding raises the possibility that new treatments for CD may also ameliorate other conditions.
My vote for the most important scientific revolution of all time would trace back 10,000 years ago to the Middle East, when people first noticed that new plants arise from seeds falling to the ground from other plants—a realization that led to the birth of agriculture. Before that observation, the human race had based its diet on fruits, nuts, tubers and occasional meats. People had to move to where their food happened to be, putting them at the mercy of events and making long-term settlements impossible.
Once humans uncovered the secret of seeds, they quickly learned to domesticate crops, ultimately crossbreeding different grass plants to create such staple grains as wheat, rye and barley, which were nutritious, versatile, storable, and valuable for trade. For the first time, people were able to abandon the nomadic life and build cities. It is no coincidence that the first agricultural areas also became "cradles of civilization."
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96 Comments
Add CommentI am excited that such a readable & thorough article has appeared in the Scientific American. CD in my family was diagnosed with the assistance of an Integrated Health Practitioner, not via a traditional medical practice. I hope the article will raise the awareness of the both the medical profession & general public. For my daughters & myself, having an accurate diagnosis of the cause of nebulous symptoms has altered our lives.
Reply | Report Abuse | Link to thisThe illustrations in this article delivered to my mailbox today, allow the complexities of the science of gluten intolerance to be easily understood by everyone.
Reply | Report Abuse | Link to thisFor those of us with Irish, Scandinavian, or American Indian genetic background, as well as others of us, gluten intolerance may very well be the open door for many of the diseases of inflammation and aging.
Since eliminating the wheat family two years ago, my thyroid has calmed down, my osteopenia hip pain has ended, my digestion is uneventful and healthy, and my extra weight has become past history.
As I re-engineered my recipes for comfort foods like mac and cheese, pizza, lasagna, chocolate chip cookies, brownies, and others, I decided to share my work, in my book entitled, Gluten Freedom EveryWay Comfort Foods Cookbook. I give presentations sharing my story and helping people understand that illness and aging don't have to go together.
Could the secret to reducing health care costs, as well as balancing the national debt, be hiding in eliminating the most common food in the American diet from the plates of those affected? It's a simple question and one I ask myself every day.
Elizabeth Lowe
Newport News. Virginia
Thank you for publishing such a well-written and engaging article. I have celiac disease and am extremely grateful for the author's important work on this topic!
Reply | Report Abuse | Link to thisIf undiagnosed celiacs might cost $25,000 per consumer (~$75 billion) and even much more money (possibly $ 50 billion) for medical treatment of chronic conditions and types of health crisis caused by missed diagnosis of celiac (such as colon cancer), and throw in another say, $50 billion for odds and ends to deal with other types of effects - like self-medicating (substance abuse), poor general functioning and productivity (driving and other accidents) and restructuring of educational and social programs (learning disability, behavioral disorders) - - -
Reply | Report Abuse | Link to thisWhy is the medical professional community not mandating the re-education of medical practitioners and the testing of patients to find those who might have been overlooked? Do we need to spend another 6 years studying the financial benefits of diagnosis ?
Why is it not a Standard to test patients who have symptoms of atypical nature? When do these symptoms become "legitimate" celiac identifiers?
Why is there a home test for celiac in Canada and many other countries, while the FDA has not approved it for sale to us?
This is far and away the best article I have read on gluten intolerance, inflammation and disease. Kudos to Fasano for such an accessible article. I am both gluten intolerant and a researcher in food intolerances, and am glad to have something to give to my family to educate them.
Reply | Report Abuse | Link to thisI am one of the many people who used the testing provided by Dr. Fasano's EnteroLab in Texas. Though I do not have a DQ2 or DQ8 gene, I have two DQ3 genes, which manifest in a strong gluten intolerance, along with a strong intolerance for dairy, soy, and more. Without those tests, I would have been a different person, trying to live with issues as far ranging as inability to focus my eyes to extreme joint and ligament pain to my tailbone moving out of place, and much more. I am extremely thankful for his research.
Reply | Report Abuse | Link to thisJeanne in Texas
Dr. Kenneth Fine is the director of Entero Lab. I, too, utilized his services.
Reply | Report Abuse | Link to thisEntero Lab is run by Dr. Kenneth Fine.
Reply | Report Abuse | Link to thisDr Fine is a recovered Gluten Intolerant. I come from a huge family with gluten intolerant problems. He by far is the most respectable expert for our situation. I listen to him out of respect for his insight and wit. He humbly figured it out for himself and now for me and dozens of my family. God Bless Dt Fine.
Reply | Report Abuse | Link to thisIn response to Karen2's question as to why the medical community is not mandating the re-education of MD's . I feel the answer was in the figures in your post. There is no doubt that "billions" are spent each year treating the symptoms of undiagnosed CD. For this reason there is too much money at stake for the labs, drug companies and repeated visits to the doctor if suddenly a trial gluten-free diet becomes the "first step" toward finding out if the person is gluten intolerant. If you recall in the article the part about the connection between grain shortages during WWII and the decline of CD symptoms you can understand that it was not an expensive test that produced this conclusion but simply the "process of elimination". The same thing would occur if one were to do an elimination diet on their own. Most of us however would not think to do this without the blessing of our primary care MD. If the doctors were unwilling or unable to suggest this on their own for whatever reason (money or lack of knowledge) I am afraid we cannot expect much to change in the near future. This is a perfect example of why healthcare is so expensive.
Reply | Report Abuse | Link to thisI am blown away at the potential medical revolution from addressing gluten. As a 55-year old female chemist who first began a gluten, casein, and soy free diet 8 months ago (first diagnosed 6 months ago), I know what "could have been" if this had been diagnosed as a child with symptoms that would be obvious today. I grew up having so many expensive tests and tx for symptoms that included GI, infertility, spontaneous abortion (we are childless), fibrocystic breasts, eczema, chronic bladder/vaginal infections, diarrhea, migraines, sinusitus--surgeries & more CTs & MRIs than I can count.
Reply | Report Abuse | Link to thisNo physician ever suggested gluten as a cause; even today many have never heard about it. At age 30 I stopped eating most wheat after noticing that this helped stop diarrhea and a sunburned-looking facial reddness right after eating wheat, or upon exercising (family called it bread red. ) In 2005 a GI doctor, upon hearing this, did the intestinal biopsy, but told me it was negative so I was not celiac and could still have gluten. I had been eating a little wheat and hidden gluten until Dec. 2009 when I read more research suggesting links to diabetes, cancer, dementia, etc. I began a strict gluten free diet then and immediately began to feel better. Now 8 months later I feel better than I ever have in life, even as a youth. I observed that avoiding dairy and soy helped much, too. Not having digestive symptoms was a thrill; I now feel so alert, happy, energetic. More surprisingly, an assortment of other pesky problems that I have lived with much of my life went away; as a scientist this leaves me flabbergasted. I list these here as evidence to maybe add puzzle pieces for researchers, physicians, and those with shared symptoms: Since going gluten/casein/soy free, no more: brain fog (feeling drugged), acne rosacea, itchy oozy eczema, arthritis, hypertension, chronic tendinitis in elbows, tinnitus, bladder incontinence (when sneezing, coughing, laughing, sometimes urgency), toenail fungus (go figure!), chronic vaginal yeast/B. vaginitis infections, sinusitis (can now wake up breathing through my nose), fatigue, and even having 1 or 2 swollen taste buds every time I ate tangy fruits (tomatoes, citrus, melons--now this doesnt happen). Whether these symptoms went due to improved nutrient absorption or from toxin removal, I dont know. I just know that researchers in this area are onto something very, very big. The implications to healthy living, healthcare costs, and government and private insurance are mind-boggling!
I'm particularly interested in the late onset of celiac disease, which happened to me. What caused the bacteria in my intestines to change? I'm hopeful they can retrain my gut to accept gluten again some day.
Reply | Report Abuse | Link to thisI am the perfect example of linking intestinal permeability and Celiac disease with other autoimmune diseases. I have Multiple Sclerosis, and after much research and with the help of excellent alterntive practitioners, I was tested for celiac disease. After testing positive for CD and allergies to other food proteins (casein and egg), changing my diet accordingly, and healing my digestive tract, I have eliminated all my symptoms of course of CD, but also Multiple Sclerosis. It has been 3 years, and the change in my health has been profound. So many people are skeptical of using diet to treat MS, but for me it has been a miracle. I wish that others seeking conventional treatment for MS, and other autoimmune diseases would also get tested for CD. I will also add, that I was considered a non-symptomatic celiac, for I had no digestive distress that others see as the hallmark symptom. I was only diagnosed after I sought alternative treatment for my newly diagnosed Multiple Sclerosis.
Reply | Report Abuse | Link to thisI will save this article for the naysayers.....
I don't buy "nogluten4me's" conspiracy theory that says some remarkable collusion (as if such a thing were possible) between doctors, labs and drug companies is somehow keeping physicians from being educated about CD. The reality is that many CD symptoms are common to many diseases and disorders. It's not that most doctors don't know about CD - it's that it might not be their "top of mind" thought when they see certain things. My wife was diagnosed with CD not because of any intestinal symptoms, but because she broke her foot twice for little obvious reason. The doctor sent her to a metabolic specialist, who suspected and eventually confirmed CD.
Reply | Report Abuse | Link to thisGreater awareness would be great, but the lack of it is not the result of some massive conspiracy or because drug companies (which get nothing from CD), labs (which get very little) or physicians are milking it to make another buck.
After reading the post by wordsworth I must admit how silly my comments were regarding a conspiracy. I agree that greater awareness is the key. Thanks for the reply.
Reply | Report Abuse | Link to thisI was treated for chronic depression, ADD, something not unlike chronic fatigue syndrome that was attributed to the Addison's Disease I developed at age 20, and chronic sinusitis for many years. All of those things (not the Addison's itself, but that damned fatigue and "brain fog") went away within days when I cut gluten out of my diet after receiving a Celiac diagnosis three months ago, at age 42. Within days! My mother, a nurse, now believes that I developed it at age 3. It is a profound and odd thing to be an adult, in one's 40s, married, with a career one likes, and to find that one's physical, mental, and emotional capabilities are -- suddenly -- much greater than one had believed, with nothing more than a dietary modification to credit.
Reply | Report Abuse | Link to thisI hope this helps your study, my child who is now 6.5 years old has been gluten free for 4.5 years. He was diagnosed 6 months after he stopped breast feeding. He rapidly lost weight could not walk, climb, and at the end could not hold up his head. He was emaciated, had a distended stomach. Once he went gluten free after doctors suggested MD, brain cancer, cystic fibrosis (during the six months of testing) he made a miraculous recovery in 2-4 weeks of diet change. The rest of the family was tested for CD and found that my 8 yo son was also CD. I tested negative, however I had a bout with lyme, and babesios, then traveled to India for work. I became very sick in India and started going downhill after returning to the US. I underwent massive amounts of antibiotics, both oral and IV. I displayed classic CD and classic lyme, joints, skin lesions, and neuroborreliosis including aphasia. When all else failed over an 18 month period of antibiotics, I finally went gluten free. After 4 months of GF I feel great and all my symptoms are gone, being horribly sick for nearly two years is no picnic, particularly when it affected my thought process and ability to speak. I am 46 years old so you have some idea of how late in life dramatic symptoms can appear. My children are thriving, thanks to GF and so am I. My sister was diagnosed at 40, years after the family accused her of being bulimic all her life due to her inability to gain weight and constant sickly appearance, were we ever wrong.
Reply | Report Abuse | Link to thisThank you , SA for the wonderful article! As someone with Celiac's Disease (my daughter and partner have it as well), I'm thankful that the disease and its health repercussions are becoming more mainstream. In my teens, I was misdiagnosed for about 7 years (which is common, from anectdoctal evidence of others). I cannot say strongly enough; for those with Celiac's, avoiding gluten is not a lifestyle choice, it is a necessity.
Reply | Report Abuse | Link to thisRe: Karen2's questions about testing...Kimball Genetics in the States has a very convinient cheeek swab DNA kit available which confirms whether one is positive for the DQ2 and DQ8 genes; their test also includes the alleles for each gene. Some health insurance pays for it, others do not. In our case, insurance did not pay, but we felt the cost was well worth it in order to confirm our daughter's status before she entered school where we are not able to control and monitor her food intake as closely.
Cheers, and thanks again, SA for a wonderful, well written, thorough and enlightening article!!
Linda, CA
As a medical student and gluten free diet adherent, I was fascinated by the discovery of a possible drug to inhibit leaky gut. I'm also on the midst of studying V. cholera and its toxins and I will never forget its action. Thank you to the scientists who continue to study this disease. I hope to join your ranks one day (in the near future!).
Reply | Report Abuse | Link to thisI did precisely that - an elimination diet on my own. My 3.5 year old son, who couldn't hold food down and had "failure to thrive" , on our second full celiac-free day, asked for breakfast 3 times! He began recovery in 24 hours, and I am (at 47) still recovering. Of course, I know now we may never be properly diagnosed because we are eating right and no longer causing the damage to our villi crucial for diagnosis (at this time, anyway). But we feel better, and nothing can make me go back to gluten. I still have muscle and joint pains, but I have no migraines, and the cramping I thought was from fibroids is gone. There are other issues to be examined (I have thyroid problem of low T3 that my primary care physician is treating and not ignoring - the way the specialist she sent me to did!) but perhaps I'm on my way to learning what autoimmune problems may be causing me to "prematurely age" - or at least, that's what it felt like! I too appreciate this article.
Reply | Report Abuse | Link to thisI probably have celiac disease, but I've kept on developing new food intolerances even with a gluten-free diet. So I probably have a leaky gut for some reason.
Reply | Report Abuse | Link to thisI sure hope that if Alba starts selling a drug to stop leaky gut, it won't have allergens in the fillers!!! But it's my dismal expectation that it will.
I was diagnosed with Celiac Desease when I was 2 years old - that was 43 years ago. Most of my life no one knew what was going on,not even doctors. My parents suffered watching me go through the torture of CD. They still tear up today when reflecting on this time. It is only in the last 10 years or so have I felt "normal" in the sense that others could finally understand what I was living, that I was not crazy and they need not give up on treatment for other physical problems I have since encountered.
Reply | Report Abuse | Link to thisMy CD was so misunderstood that I was seperated while in kindergarten from the other students at snack time - because they were eating graham crackers and I could not.
My elder sister has since been diagnosed (when she was 28 years old) as well as my mother - who thought all along she had it but had not been diagnosed.
My six year old son who was born weighing almost 9 pounds, developed failure to thrive and dropped to the bottom 1 percentile of weight by 17 months of age. He had a speech delay, behavioral problems, and sensory issues. His doctor kept ignoring our concerns about his lack of weight gain and told us to be happy he wasn't overweight. He was diagnosed with autism at age 4 1/2. Fortunately, we took him to an autism specialist who told us to put him on a gluten free and casein free (GFCF) diet. Within days his symptoms of autism began to disappear. He does not have a formal diagnosis of CD, because his blood tests came back negative after being GF for 4 months. He is doing very well today and most people would never guess was diagnosed with autism.
Reply | Report Abuse | Link to thisI am 45 y/o and was diagnosed with celiac disease by intestinal biopsy one month ago after several months of severe indigestion. After going on a strict GF diet my digestive symptoms disappeared completely. I have a history of anemia, unexplained miscarriages, and yeast infections.
Aside from preventing untold suffering, I am certain that routine screening for CD would save our economy billions of dollars in unecessary tests and medical procedures.
An excellent article; well written, easily understood, with solid science backing up the conclusions as well as clearly defined "next steps". Articles like this are why I read scientific american. Please, keep up the good work.
Reply | Report Abuse | Link to thisI relate to what you said a lot. I'm also an analytical person, and I was just so shocked to find the orthodox medical system, which we are taught to trust, was so horribly wrong.
Reply | Report Abuse | Link to thisYou may find after a year or so that it's not limited to gluten, dairy and soy. Food sensitivities often surface in stages. That happened to me. And now, the only foods I can eat that I ate regularly while eating gluten are lettuce, radishes and vanilla beans.
The new diet reduced my anxiety, depression and anger a LOT. Also I stopped being "hypoglycemic" - getting jittery after eating sweets. And much less joint pain, "brain fog (feeling drugged)", and less sinus inflammation.
"I am blown away at the potential medical revolution from addressing gluten. As a 55-year old female chemist who first began a gluten, casein, and soy free diet 8 months ago (first diagnosed 6 months ago), I know what "could have been" if this had been diagnosed as a child with symptoms that would be obvious today. I grew up having so many expensive tests and tx for symptoms that included GI, infertility, spontaneous abortion (we are childless), fibrocystic breasts, eczema, chronic bladder/vaginal infections, diarrhea, migraines, sinusitus--surgeries & more CTs & MRIs than I can count. "
Fascinating article. The comments regarding the difficulties of lifetime adherence to the gluten-free diet struck home with me. My sister, years after a positive diagnosis, lapsed back into her old eating habits and ended up in the ER malnourished, emaciated, and with severe neurological problems. She is fine now, but denial almost killer her.
Reply | Report Abuse | Link to thisI am very surprised how a six page article discussing gluten intolerance, dietary peptides and leaky gut could completely omit a single reference to autism. So many autistic children have made remarkable recoveries with gluten-free and/or casein-free diets specifically due to the elimination of peptides in the bloodstream (from leaky gut). Wouldn't the treatment advances described have huge implications in treating the rapidly expanding ranks of autistic kids? Or does saying that risk the wrath of the American Academy of Pediatricians?
This article shows that the medical establishment is slowly coming along, however, still suggesting solutions based upon pharmaceutical intervention rather than to correct mistakes in living.
Reply | Report Abuse | Link to thisThe alternative medical community has long recognized this triad of autoimmune disease stimulating factors and has been busy addressing it in effective, wholistic approaches for many years.
The single most important step is to "break the vicious cycle by teaching parents to become healthy before they conceive children, take the necessary steps to give birth to healthy babies and continue to raise them in a healthy manor until adulthood.
These children have intact, healthy intestinal tracts. They have no CD or any other autoimmune diseases and they accomplish this without taking any pharmaceutical drugs.
There are 3 main steps to raising children in this way, which should be followed by every family.
Step 1: Eat nutrient rich foods following the principals of proper nutrition used by healthy people the world over for thousands of years. These principles have been largely discarded in the last 200 years in favor of an industrialized food system.
These principles were carefully delineated by Dr Weston A Price in the 1930's and are taught today through the Weston A Price Foundation.
Step 2. Avoid toxins that are unnecessary and degrade your health as well as contribute to a leaky gut and an overactive immune system. Examples are; heavy metals like mercury (in amalgam dental restorations), petrochemicals like the industrial PCB's, pesticides, fertilizers, most pharmaceutical drugs and plastics, radioactivity and electromagnetic pollution coming from improper wiring and filtering of our electrical equipment, cell phones, microwave ovens and towers.
Step 3. Find a Healing Art that you can depend upon to build your health over time. Well done healing arts build your bodies health, strengthening immunity and resilience in many ways. This greatly aids in preventing any type of chronic disease from gaining a foothold. Examples are Ayurveda, Traditional Chinese and Homeopathic Medicine.
Parents that follow these 3 steps are rewarded with vibrant, robust, good natured , healthy, children that grow into well balanced, healthy, productive adults without chronic diseases or the need of expensive medical treatments.
People following these guidelines, and there are thousands that do, have health care costs that are often less than $500/year for entire families.
Roy Ozanne, MD, HMD
wholehealthprograms.net
I have probably been gluten intolerant my whole life and have had malabsorption syndrome since I was a child, resulting in pica, and iron deficiency anemia among other things. It wasn't until I started studying with the Institute for Functional Medicine, and did the "physician health thyself" thing, that I started connecting the many dots, that lead to discovering my own undiagnosed problems. Laboratory testing and elimination diets later, I realized I had the genetic propensity, a positive malfeasance A test..which not all gluten intolerants will show positive for, + Anti-TPO antibodies test, showing my immune system was attacking my thyroid, and later the beginning of Hashimoto's Hypothryoiditis. Asthma, eczema and number of other problems are also connected. Though I'm a practicing chiropractor and have studied nutrition for years, even practiced macrobiotics many years ago, it took me awhile to connect the multiple effects that were being caused by gluten. Also more is being written about this and studied as the years go by, and our science is getting more refined. As to the above comment about MD's; in my experience doctors are very slow to change their minds or habits in light of new information, and I believe it's more part of human nature to cling to old beliefs and patterns of behavior rather than change, that it is some kind of malfeasance or sinister collaboration with the drug industry.
Reply | Report Abuse | Link to thisI do blood tests, genetic testing, and the elimination diet with my patients with good success. I believe that several individuals in my family were misdiagnosed with IBS, who were really gluten sensitive. Recent writings about "zonulin", which may be what's making those with gluten sensitivity more sensitive in the first place, i.e. having a more permeable gut to begin with, makes a lot of sense. We must all keep open minds, read, and use a systems biology model of diagnosis in use, which connects the multiplicity of effects in different organs and physiologic processes simultaneously, rather than coming up with one "name" or diagnosis, and medicating for it. Rather than look at the broad reaching, holistic matrix of factors causing symptoms and diseases, medicine has been using a reductionist model of exclusionary diagnosis for too long, and it is now significantly outdated.
I'm convinced that the drug companies (to some degree) stand in the way of more studies about gluten intolerance. They have nothing to gain when a simple cure, such as change in diet, is the main remedy. I suspect that a change in diet for many uninformed Americans would strongly reduce the intake of prescription drugs throughout our society, while eliminating many health issues. It saddens me that more emphasis is not put on diet when we visit our health practitioners. What is truly unfortunate is that yesterday I bought one tomato that cost as much as an entire meal at McDonalds!
Reply | Report Abuse | Link to thisMany of my family members have been diagnosed with CD including my mother, 2 brothers, my daughter and youngest son and recently myself. Some were diagnosed by biopsy and some by change in diet. The authors suggests that following a strict GF diet in infants until after age 1 may help prevent the onset of CD. I can say from experience, it does not. My oldest child is now 30 years old. Our pediatrician suggested with the family history that we follow a strict diet of nursing only until 6 months, then slowly introduce solid food with strictly GF foods until at least 12 months of age. His logic was not that it would prevent CD, but that an older child might not become so critically ill as quickly and would be easier to diagnose. We followed this advice strictly, even to the point that they were not placed in a day care setting or even with relatives until they were at least 18 months old. The 2 youngest children still developed CD.
Reply | Report Abuse | Link to thisI am a mother with CD of a 5 yr old and a 1 yr old. I kept both of my children gluten-free for the first year for two reasons: CD is darned difficult to diagnose in infants and I didn't want to risk any malnutrition during such a critical developmental stage and it just seemed to make sense to me to keep something that causes ME such problems away from them early on. With my first child, my pediatrician sort of acted like I was a crazy, overcautious 1st-time Mom, but went along with it. By the time we got around to my 2nd son though, 4 years later, he agreed it might actually be a good idea. My in-laws, however, thought I was crazy both times.
Reply | Report Abuse | Link to thisBesides the fact that this is a really nifty and informative article about CD in general, I get to hold up the study with infants to everyone who thought I was nuts and say, "SEE! I told you so!!!" By the way, both my sons eat wheat/gluten now and so far, so good. I don't think I developed the disease until later in life, though (I wasn't diagnosed until my 30's when I had clearly been suffering from it for years, so I'm not sure of the exact onset), so I'll continue to keep my fingers crossed.
I agree with previous posters about the medical community being slow to adjust to new information and I think screening should be more common, given the repetitive studies showing CD is far more widespread than initially thought (1 in 133 people? Serriously? And yet the medical community is STILL resistant to test people, even when they ask?) I went GF on my own after being sick for years and told there was nothing wrong with me. Then when I felt better, my doctor actually told me it was all in my head because, "what you eat could not possibly affect an intestinal disorder". After I got myself a new doctor (I mean, REALLY), I was finally diagnosed with CD. Although I cope fairly well, I still hope I have given my children an edge up with their GF first year so they can avoid all this.
My CD symptoms included a constant vibration in my foot and leg, ataxia, chest pains, skin problems and to a much lesser degree, digestive problems. Some with CD are "neuro dominant" and I suspect get diagnosed with MS as a result, as my neurologist suggested I might be. My symptoms disappeared with gluten elmination. The foot tingling reappears when ANY gluten is consumed. This is in spite of the fact that I tested negative for CD. (The doctor told me to resume eating wheat for a month so the results would be accurate. I lasted 3 days before I couldn't stand it and took the test.) Even with a negative result, you can't convince me to resume eating gluten.
Reply | Report Abuse | Link to thisAs to why gluten intolerance is skyrocketing (http://www.celiac.com/articles/21859/1/Celiac-Disease-Rates-Skyrocket-Up-400-in-Last-50-Years/Page1.html), I suspect several factors beyond the increase from 2% gluten in wheat in the 1950s to 18% today. Scientific American wrote about wheat fungus threatening the world's wheat supply (http://www.scientificamerican.com/article.cfm?id=global-wheat-crop-threatened-by-fungus) Meanwhile, fungicides have been applied, no doubt to the wheat many are eating today for breakfast, lunch and dinner.
A friend told me that her children became gluten intolerant--and highly sensitive to many foods--during a time when she lived in a house that had mold in the attic insulation. A couple of years after moving, their health dramatically improved and their food sensitivities disappeared.
Those of us with CD may be the canaries in the coal mines. Antibiotics, pesticides, exposure to mold, fungicides in food, environmental pollution--where's the tipping point for a person's health?
Hang in there, folks. Just yesterday I was in a deli and the man next to me was asking about the ingredients in a dish because he was "allergic to wheat." As more people learn what is really wrong with them, the general public and food purveyors will stop asking what gluten is and have increasingly more choices for us.
patriciagwheeler,
Reply | Report Abuse | Link to thisEnlighten us as to how the drug companies could possibly "stand in the way of more studies about gluten intolerance". I feel this mistrust of drug companies, while it may come naturally to some, is unfortunate.
These drug companies have done wonderful things over the past several decades to develop cures and treatments for many previously debilitating and crippling diseases. True that there hasn't been equal progress against all diseases, but drug development is somewhat serendipitous. It's a big universe of diseases so uneven progress is to be expected. I don't believe it's intentional, and I believe the men and women who work for these companies are doing their best on our behalf. Let's just hope our government, in the name of containing costs, doesn't destroy this industry.
I currently work at Johns Hopkins in one of the two labs that test for clinically diagnostic celiac antibodies. I can tell you that MDs are required to participate in "Continuing Medical Education," at this hospital at least. I attended a seminar on celiac last year, and I can say that since I began working here (only 2 years ago) the number of physician test requests for celiac (my lab tests for endomysial Ab, the other lab performs many other related including tissue transglutaminase) has close to tripled, and we find on average about 1 in 100 requests we receive are positive. This is only slightly higher than the incidence reported in this article which leads me to believe that physicians here are beginning to include these tests for more people with milder or atypical symptoms.
Reply | Report Abuse | Link to thisdigiterati: the most common diagnostic test detects antibodies which disappear pretty much as soon as you begin a gluten free diet, which is why you may have tested negative. Also, these tests generally test for a sub-type of antibody called IgA, but a very very small population of celiac patients are IgA deficient, in which case IgG antibodies should be tested for. Again though these only appear when you are consuming gluten in your diet.
Reply | Report Abuse | Link to thisPossibly many answers lie in the articles reference that humans had nomadic diets. Adaptations evolved over tens (or hundreds) of thousands of years to cope with this diet. It would perhaps be wise to keep as close as possible to this as a base diet (especially in a diagnostic setting).
Reply | Report Abuse | Link to thisAs I understand it (memories of The Ascent of Man by Bronowski) wheat was a chance hybridization of two wild grasses which was then adopted by early man because of its productivity and easier processibility. He probably ate neither before this. Similar caveats lie with domesticated milk and meat consumption. (Note the bred for characteristics of higher fats in both and who knows what else considering the unnatural diet these animals are fed)(The extreme example is pate de foeie where one consumes dis_eased (sic) goose liver)
Processed food primarily adds value to the producer and retailer through longer shelf life and cheaply manufactured taste enhancers. Simple guide lines for diet follow.
Eat a wide variety of food. This dilutes any high level toxin that exists in any particular food.
Eat (buy) unprocessed food that somebodys great grandmother would recognize.
Do not keep high calorie food that is quickly and easily available. Significant effort (exercise?) should be required before eating. This ensures that one builds up a significant hunger before consumption.
Concerning the medical, pharmaceutical conspiracy .
This no doubt occurs to some degree (consciously and subconsciously)(internal memos of tobacco companies). Note that the law ordains that company directors prime responsibility is to their companies share holders profits. This would be a good policy (for all) in an evolved free market where the LONG term profits are the aim. However because of natural greed of directors/role players personal short term profits/reputations and consequent political (and market) manipulation, this free market does not exist. History has taught us that we cannot rely on self administered ethics . Consumers need to be protected by checks and balances which are being steadily eroded by political manipulation. Note budget allocations (and appointments) for FTC (Federal Trade Commission) and FDA whose supposed aim is to protect consumers from unfair trade practices.
Wake up, STOP, LOOK, THINK, ACT, REPEAT, DUH.
I found the article very informative, but lacking a few things I would like to know. How does the gluten intolerance trigger bone loss and arthritis? Is there any more info available on how the connection works? Is anyone doing any research on reversing bone loss if wheat is eliminated?
Reply | Report Abuse | Link to thisthanks
For readers that want to have excellent, effective diet therapies and a very complete explanation of the autoimmune triad of genetics, intestinal health and diet, please see The Gut and Psychology Syndrome by Dr Natasia Cambell-McBride.
Reply | Report Abuse | Link to thisThis is a fabulous book be a doctor that has helped thousands of autistic and cd childrren to an excellent recovery and includes the science that makes the picture understandable.
We must come to understand our illnesses in a greater ecological context, including the ecology of our gut and its interaction with our outer ecology which includes all the farm chemicals, ecology disrupting antibiotics, endocrine disrupting industrial chemicals, chlorinated water, GMO foods, etc.
I am really not an extremist either. I have just been a practicing physician for 44 years and have consistently seen that poisoning nature poisons ourselves and by living in harmony with nature we restore harmony in ourselves.
If we only focus on gluten, there will arise another set of illness to keep reminding us!
Best wishes,
Roy Ozanne, MD,HMD
wholehealthprograms.net
I would just like to note that not all problems people might have with wheat in the diet are due to CD, and the person overheard saying they were "allergic to wheat" may have been telling the simple truth and not simplifying the complexities of CD for easy communications. I myself have an allergy to wheat as well as to several other foods. I am reasonably well informed about CD and am confident it doesn't lie at the root of my particular dietary challenges. Just as there is such a thing as convergent evolution, there are also convergent dietary nuisances.
Reply | Report Abuse | Link to thisFinally, kudos to the author and to SA for such a well written, well informed and downright useful article. You have done a great service the public's education about this important topic.
My husband was first diagnosed with CD when he was less than a year old, after months of illness. Because of his CD, avoided solids until our children were 6 months old (exclusively breastfeeding) and off gluten for the first year. I also continued nursing until they were at least 2 years old. As others have written, we had friends and family members who thought we were a little crazy and over-cautious. We don't expect that they are now immune from developing CD - in fact whenever any of them has a stomach problem or frequently other illnesses, the first thing our family doctor does is test them for CD - but it is nice to see evidence that we did the right thing as far as trying to protect them.
Reply | Report Abuse | Link to thisGood grief. The marxist conspiracists crawl out of the woodwork at the drop of a hat.
Reply | Report Abuse | Link to thisFolks, it's the FDA that is not approving the home test. Thats government. The funny thing is, even though it's the government holding this back, people will still blame corporations for somehow evilly influencing said government.
As always, the state loves it when you think some business is the real threat to your freedom and prosperity.
My son has CD and he was exclusively breast-fed until he was over a year old (he was not interested in food until then). He and I were simultaneously diagnosed; he was age 8 and I was age 39. It was a great day because we are so much healthier and happier.
Reply | Report Abuse | Link to thisI don't think avoiding gluten for the first year of life will help.
J'aimerais saluer le courage de mon fr�re Simon qui a pass� � travers de difficiles moments alors que personne (les m�decins) ne savaient ce qu'il avait. Apr�s des recherches, il a compris qu'il avait le CD. Cet article montre qu'enfin, les recherches montrent enfin la v�racit� de ce mal complexe en d�pit des avis de certains m�decins qui refusaient il y a quelques ann�es de voir un lien entre le gluten et sa maladie.
Reply | Report Abuse | Link to thisMartin Dubreuil, Montr�al, Canada
JD,
Reply | Report Abuse | Link to thisHere are some studies on bone loss/osteoporosis/gluten:
http://jccglutenfree.googlepages.com/osteoporosis
Also, some great overview articles which will explain more about nutritional losses and consequences:
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD
http://www.aafp.org/afp/980301ap/pruessn.html
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)
http://www.aafp.org/afp/20021215/2259.html
JD,
Reply | Report Abuse | Link to thisHere are some studies on bone loss/osteoporosis/gluten:
http://jccglutenfree.googlepages.com/osteoporosis
Also, some great overview articles which will explain more about nutritional losses and consequences:
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD
http://www.aafp.org/afp/980301ap/pruessn.html
Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)
http://www.aafp.org/afp/20021215/2259.html
I became celiac late in life with the disease on both sides of my family. Two of my three children acquired it in their teenage years. Living w/out gluten is easy once you get used to it, however, more expensive for any kind of baked goods. In the last 8 years, I've seen a greatly increased awareness of celiac and have found many bakeries and restaurants with gluten-free menus. Word of mouth is a powerful weapon. We can't wait for the "medical community" which works at a glacial pace and is in the fist of big pharmaceutical and insurance companies.
Reply | Report Abuse | Link to thisI would like to share my experience with diarrhea and an organic cure that may help in your research. I skinned my knee with a sea shell of sorts and ended up with Staphylococcus Aureus. The Doc gave me some antibiotics that didnt work, so after some blood work I was given a different kind of antibiotics, which cured the infection but gave me a severe case of diarrhea. After about a month with diarrhea I spoke to a military doctor, by chance, he suggested an extract from oregano and recommended the origins of the oregano oil come from the Mediterranean (it containing 70 % of the specific chemical). It contains a higher chemical compound than the oregano from Spain or Mexico. I took four drops in my soup and was cured within hours. I have suggested this treatment to two of my buddies who came back from overseas with diarrhea and it worked for them also. I dont know what it is thats in the oregano oil but it works. Maybe it will help in your research. Good Luck
Reply | Report Abuse | Link to thisYou are so correct - have you written your politicians to support Obama's health care reform? We need to stick together on this - I have suffered for 3 years with CD problems - and boy, have I gone to doctors and bought prescription drugs as well as OTC medications. It is awful to think the SPECIALISTS I went to see never mentioned this possibility nor tested me for this problem. Finally, my family doctor tested me. What a shame that AMERICANS have to suffer because of money & pressure from drug companies and other lobbiests who won't change because of the almighty dollar. SPEAK UP - support change - we can see how the system doesn't work as it is!
Reply | Report Abuse | Link to thisHi Karen;
Reply | Report Abuse | Link to thisThere is a very good test that you can order online.My doctor reccomended it. www.enterolab.com .If you have Celiac you are also likely to have problems with dairy because the small villi that line your gut are what secrete lactase that digests dairy.After several months of a no gluten diet you can usually go back to dairy. Lynne/Scleroderma caused by celiac
Karen,there is a very good test available online www.enterolab.com My doctor had me take it to see if Celiac might be the reason I got Scleroderma and my sister who got Lupus.Doc was dead on correct.We both have been on antibiotics for the last decade and are now in remission.If you have any questions about the test you can e-mail me and tell you more lynneandsantos@citenet.net
Reply | Report Abuse | Link to thisKaren,I forgot to tell you that there are several tests available.Usually dairy intolorance goes along with Celiac because the tiny damaged villi that should give you the lactase needed to digest are not working.After a year totally gluten free I now can have dairy with no problem. Lynne
Reply | Report Abuse | Link to thisThis article is so fascinating and informative. I was diagnosed with CD two years ago after years of mysterious stomach issues, and my dad and sister have Type 1 Diabetes. Seeing the connections between our conditions is illuminating. I appreciate very much the thorough article you have prepared on this topic. I learned more today about my disease than I've ever known.
Reply | Report Abuse | Link to thisThis is a fascinating and informative article. I was diagnosed with CS two years ago after years of mysterious stomach problems. I appreciate the thorough article you have prepared on this topic. I learned more today about my disease than I've ever known.
Reply | Report Abuse | Link to thisDr. Fasano is not with Enterolab. I believe you are confusing him with Dr. Fine.
Reply | Report Abuse | Link to thisI think that like lactose intolerance, CD is a vestige of our non agricultural past. Maybe CD patients experience a gluten reaction stronger than the average person, but perhaps its not the best for any of us to be consuming it. Ive heard that across the board gluten tends to increase inflammation and lower immune system response. Maybe what the wheat grass proponents say is true, that it was never meant to be eaten as a grain, but as a grass.
Reply | Report Abuse | Link to thisThank you Dr. Fassano for all your celiac research! I am a biopsy proven celiac who participated in your 2003 epidemiological study with my young children. Though my daughter was positively identified as celiac, my sickly son's screening was found to be "inconclusive" due to his low IgA. Months after we particpated in the study, I read about an experimental assay to detect IgG tTG, instead of IgA tTg, in IgA deficient individuals. I asked your lab assistant, Debby, if she could use my son's pre-gluten free blood (still in your freezer) to run the assay. She did and he was found to be very positive! Thank you and your team for going the extra mile for more difficult cases and thanks for all your hard work and research to bring this disease to the foreground. Not only did your study identify my son as a celiac, you discovered his low IgA status. My youngest son, born after the discovery, was also found to have very low IgA (among other immune irregularities). Both boys have frequent infections and are seen by a clinical immunologist. One is on IViG. I wouldn't have been tipped off to their immune deficiencies/defects if not for your study. Celiac was just the tip of the iceberg.
Reply | Report Abuse | Link to thisThe quote below triggered a memory from my post-grad Animal Science program of 34 years ago.
Reply | Report Abuse | Link to this"How the body uses zonulin to its advantage remains to be established. Most likely, though, this molecule, which is secreted by intestinal epithelial tissue as well as by cells in other organs (tight junctions have important roles in tissues throughout the body), performs several jobsincluding regulating the movement of fluid, large molecules and immune cells between body compartments."
In our Protein Nutrition course we learned that in neonatal calves, and I suspect humans, the tight junctions remain relatively open for the first few days after birth. We were told that this facilitates the absorption of the large immumoglobulin molecules from the colostrum, so that the neonate can obtain an immediate immune protection from the diseases that the mother has been exposed to. This provides at least some immunity until the neonate's own immune system begins to function.
Veterinarians have known this for over 30 years. It is the reason for their recommendation that calves should receive colostrum within a few hours of birth.
Green Cow
The quote below brought back a memory of a Protein Nutrition course that I took during my post-grad program in Animal Science over thirty years ago.
Reply | Report Abuse | Link to this"How the body uses zonulin to its advantage remains to be established. Most likely, though, this molecule, which is secreted by intestinal epithelial tissue as well as by cells in other organs (tight junctions have important roles in tissues throughout the body), performs several jobs—including regulating the movement of fluid, large molecules and immune cells between body compartments."
We learned that in neonatal calves - and I expect babies - the tight junctions remain relatively open for a few days after birth. We were told that the purpose was to facilitate the absorption of the large immunoglobulin molecules in colostrum, that carried immune protection for the diseases that the cow had been exposed to.
Veterinarians have known this for at least 30 years because they used it as the basis for their recommendation that newborn calves need to receive colostrum within the first few hours of birth or it would not give effective immune protection.
R.G.
Hi Ann, do some research on eating RAW and see if you want to try it out... I've gotten even better results with a balanced raw diet thanjust cutting out the "problem" foods! -syd
Reply | Report Abuse | Link to thisI was found to be "off the charts" when diagnosed with Celiac through each of the three test - antibody, visual intestinal inspection, and biopsy - despite the fact that my only "symptom" was low bone density at a relatively early age (late forties). I will always feel that my endocrinologist saved my life....
Reply | Report Abuse | Link to thisWhile I agree 100% that we as a collective society need to completely overhaul our lifestyles for general health, let's not forget that lifestyle alone is not the solution to autoimmunity cases. That is a typical response made by people who truly do not understand autoimmune disease and/or refuse to admit that they are useless to patients who have it as they can do nothing for them.
Reply | Report Abuse | Link to thisAutoimmune disease is not new. Type 1 diabetes for example (the severe, fatal without insulin, typically juvenile onset, unpreventable and non-weight or lifestyle related kind) has been documented since Egyptian times. So you can't only blame 'modern' pollution, chemicals, and lifestyles.
I know MANY young children who have developed autoimmune disorders despite their parents living 'healthy lifestyles'. They were breastfed, fed only organic foods, parents avoided chemicals in the house, not allowed to use plastic bottles, etc. And guess what, they still developed autoimmune disease. I find it hard for a 'doctor' to say such sweeping statements when the actual cause for most autoimmune disease is unknown.
Viruses have been linked strongly with autoimmunity in general. Vaccines may play a role as well if you have 'unlucky' genes. People with autoimmunity surviving to pass on their genes or preserving their childbearing capability with modern medicine doesn't help either. So please consider that many people could and can NOT prevent autoimmune disease in their children. If a child has the 'right' genes, and encounters the 'right' viruses, autoimmunity may appear.
I agree 100% that pollution, chemicals, and even magnetic fields may impact our immune systems, but they are just tipping the scale. Autoimmunity can happen without them, as evidenced by historical data. To blame the parents or individuals for autoimmunity is just wrong.
If these substances can trigger autoimmunity in those with less of a genetic disposition and/or in the absence of another trigger, it still isn't the fault of the patients or parents. Just how can you avoid the toxic world we live in today when our entire ecosystem is a garbage dump (air, water, etc.)?
Let's start working with patients instead of playing the 'blame game', which 'doctors' (I'm not convinced that you are a medical doctor) love to do when they can't help someone and feel helpless. I agree with some of what you said, but your conclusion simply is not reality. If curing and preventing autoimmunity was that simple, no one would have it.
Even if your doctor doesn’t recommend you get a celiac test, you, as an educated patient can request your doctor run the test for you. Sometimes patients have to teach doctors what is important.
Reply | Report Abuse | Link to thisThere are other tests you might want to know about. I've explained this here: http://www.metametrixinstitute.org/post/2009/07/31/testing-for-celiac-disease-and-gluten-sensitivity.aspx
For those of you diagnosed with Celiac Disease (also Ulcerative Colitis, Crohn's disease, and Irritable Bowel Syndrome) please go to Amazon and look up reviews for the book "Breaking the Vicious Cycle: Intestinal Health Through Diet." These digestive disorders have been successfully treated and cured since the 1950's through diet - by encouraging growth of good bacteria in the digestive system in order to heal the leaky gut. I also recommend "Gut and Psychology Syndrome" for additional information and treatment through diet (almost the same diet) for autism, schizophrenia, ADD, ADHD, depression, dyslexia, and dyspraxia.
Reply | Report Abuse | Link to thisGreat article! And the greatest part? ......."Recently Alba received approval from the U.S. Food and Drug Administration to expand studies of Larazotide to other autoimmune disorders, including type 1 diabetes and Crohns disease."
Reply | Report Abuse | Link to thisUsing Larazotide to cure non-celiac autoimmunity has been a foregone conclusion since its inception, because other immune diseases have a very large cominality with celiac disease. Celiac patients who also have other autoimmune disease are destined to have all their autoimmunity cured by larazotide.
If larazotide proves safe and effective, doctors will start curing diseases heretofore not even recognized as autoimmune diseases.
after suffering with ulcerative colitis for years-allergy to aspirin didn't help (as that is the preferred medication for UC)- I discovered, accidently, that if I stayed away from wheat and wheat products I remained in remission. I was teated for celiac disease and was told the result was negative, but my doctor suggested I continue to keep wheat out of my diet anyway as long as it had a positive effect- I have and for the last 7 years I have been symptom free.
Reply | Report Abuse | Link to thisThis article is so insightful. I wish to add, from my own experience, that Dr. Fasano is right on target. For me, the "microbiome" changed when underwent abdominal surgery to have my gallbladder removed. When I read a study that concluded that supplemental use of cholostrum could prevent bacterial dysbiosis prior to abdominal surgery, I was convinced that this is what happend to me and why my Celiac Disease didn't appear until age 46.
Reply | Report Abuse | Link to thisHere are unexamined cofactors that impair research, prevention, diagnosis,and treatment of CD and many other diseases:
Reply | Report Abuse | Link to thisformaldehyde in FEMA trailers and other sources (aspartame, dark wines and liquors, tobacco smoke): Murray 2008.01.30: BM Kapur -- folic acid protects most people from conversion of methanol into formaldehyde and then formic acid 2009.07.01
http://rmforall.blogspot.com/2008_01_01_archive.htm
Wednesday, January 30, 2008
http://groups.yahoo.com/group/aspartameNM/message/1508
The FEMA trailers give about the same amount of formaldehyde
daily as from a quart of dark wine or liquor, or two quarts
(6 12-oz cans) of aspartame diet soda, from their over 1 tenth
gram methanol impurity (one part in 10,000),
which the body quickly makes into formaldehyde -- enough
to be the major cause of "morning after" alcohol hangovers.
Methanol and formaldehyde also result from many fruits and
vegetables, tobacco and wood smoke, heater and vehicle exhaust,
household chemicals and cleaners, cosmetics, and new cars,
drapes, carpets, furniture, particleboard, mobile homes, buildings,
leather ... so all these sources add up and interact with many other
toxic chemicals.
folic acid prevents neurotoxicity from formic acid, made by body from
methanol impurity in alcohol drinks [ also 11 % of aspartame ], BM Kapur, PL
Carlen, DC Lehotay, AC Vandenbroucke, Y Adamchik, U. of Toronto, 2007 Dec.,
Alcoholism Cl. Exp. Res.: Murray 2007.11.27 [ actually, a fairly complete
review of recent developments... ]
http://rmforall.blogspot.com/2007_11_01_archive.htm
Wednesday, November 27, 2007
http://groups.yahoo.com/group/aspartameNM/message/1495
formaldehyde, aspartame, and migraines, the first case series,
Sharon E Jacob-Soo, Sarah A Stechschulte, UCSD, Dermatitis
2008 May: Rich Murray 2008.07.18
http://rmforall.blogspot.com/2008_07_01_archive.htm
Friday, July 18, 2008
http://groups.yahoo.com/group/aspartameNM/message/1553
Dermatitis. 2008 May-Jun; 19(3): E10-1.
Formaldehyde, aspartame, and migraines: a possible connection.
Jacob SE, Stechschulte S.
Department of Dermatology and Cutaneous Surgery,
University of Miami, Miami, FL, USA.
Aspartame is a widely used artificial sweetener that has been
linked to pediatric and adolescent migraines.
Upon ingestion, aspartame is broken, converted, and oxidized into
formaldehyde in various tissues.
We present the first case series of aspartame-associated migraines
related to clinically relevant positive reactions to formaldehyde on
patch testing. PMID: 18627677
On May 22, my age 41 daughter, after getting weaker and paler since October, had to rush to the hospital at 10 pm on a Friday night, when a blood test found dangerously low red blood cell count. She got 3 units of blood and was home in two days. After weeks of tests, the diagnosis was Celiac Disease.
Reply | Report Abuse | Link to thisReading the remarkably useful article and the 66 very helpful comments raises questions in my mind about decades of symptoms in various members of my family.
The largest support group I know of is GlutenFreeCaseinFreeKids, for families whose kids have severe reactions to tiny amounts of gluten or casein (milk protein):
http://groups.yahoo.com/group/gfcfkids/messages
13,891 members, 382,210 posts
Please visit our home website www.gfcfdiet.com which provides the largest list of possible GFCF foods on the Internet and immediate help and answers about dietary intervention.
This list, "GFCFKids" is unmoderated and unrestricted.
The principle aim of this list is to provide a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children's diets.
We hope that the discussions will include practical information and tips on following a GFCF(etc) diet; scientific research and opinion;
the latest developments in understanding GFCF(etc) diet-related health problems;
your personal stories and experiences with relation to GFCF(etc) problems;
information on what food is GFCF(etc)and what is not;
tips on how to eat out of the house;
recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins, minerals, herbs and other supplements may be appropriate for a child with autism;
how to cope with difficult diet demands, plus support for parents.
Appropriate topics for discussion on the list include anything at all related to diet and autism spectrum disorders -- including GFCF but also yeast, nitrates/nitrites, dyes, vitamins, minerals, supplements, dealing with teachers, friends, schools, outings, siblings, testing, etc...
Please keep general off topic information off the list as much as possible and clearly mark off-topic posts.
Thank you, Cara DeHart Lewis Listowner, GFCFKids
See also www.notmilk.com by Robert Cohen, a feisty father of four daughters and gourmet vegan chef.
Also www.vegsource.com
And www.drmcdougall.com
I am Celiac and gluten intolerant--tested through Enterolab while on a GF diet--and probably have been for better than 20 years. I developed 2 autoimmune diseases (lupus & Sjorgen's Syndrome), vitamin D deficiency, skin rashes, adult cradle cap, cystic acne, weight gain and poor tear quality before I diagnosed myself by following a GF diet and then testing later. My health issues improved after going GF, but did not resolve completely until I gave up all grains. I have both genetic markers and my daughter has ADD which improves when she is GF. There's a community of people who consider themselves gluten-intolerant (they do not have CD but have symptom improvement on a GF diet) and the statistic are 1 in 7 people are GI. And, there is some research I've run across indicating grains, soy, legumes and dairy are all problematic.
Reply | Report Abuse | Link to thisWhile I think research to understand the mechanism of this disease and other diseases is very encouraging, I'm not at all supportive of the creation of drugs or inhibitors. I think our bodies are trying to tell us something and we should be listening! We should think about returning to a diet similar to our ancestors diet that was followed for millions of years when eating was instinctual. It's that simple--fruit, veggies, nuts and grass-fed animal products in less frequency.
Since diagnosing and curing myself of some awful health issues, I have gone to school to become a holistic health counselor. I assist people in transitioning to a GF diet and, more importantly, as seeing their diagnosis as an opportunity for optimal health, rather than a restriction.
In any event, I hope most people decide to follow a GF diet rather than take more chemicals into their body in the way of prescription meds (once released) that will enable them to eat gluten--something I'm intuiting our bodies were never meant to eat.
Constance Freundt, CHHC
www.asenseofhealth.com
This article was recommended by my dentist and was appreciated immensely. I have Celiac Disease and suffered for many years. I was one of the fortunate few: My physician proactively tested me for Celiac Disease. I have been Gluten-Free for 4 months and feel like I have joined living! If you continue to suffer from a host of symptoms (even if you think they are unrelated) insist that your physician performs the appropriate diagnostic testing!
Reply | Report Abuse | Link to thisHello,
Reply | Report Abuse | Link to thisThis was an excellent article. I am wondering about the connection to other intolerances. For example, in addtion to CD, I am lactose fructose, and soy intolerant. Do they resolve over time? I have been waiting about four years.
Thanks,
Suzi
Thank you Dr . Fasano for this research. My case was diagnosed in 1967 (age 18) by a german doctor in Konstanz, Germany. Symtoms till date are itchy oozy skin legions, fatigue..... For this I have been taking 50mg of DADPS (DiAminoDiPyhnolSulfon) daily since the age of 18, which helps to suppress my skin problems. Today I am 62. I am interested to know how this works. Please let me have some information on this if possible.
Reply | Report Abuse | Link to thisThank you.
Pami Wahan, 6242 Wauwil, Switzerland
My daughter has celiac - I just posted a blog about it here - www.gonnadrinkthatsun.blogspot.com
Reply | Report Abuse | Link to thismoldwarriors.com and biotoxininfo.com inform us that there are three levels of genetic sensitivity to mold toxins. The sensitive and the extremely sensitive are more likely to have Anti-gliadin (gluten) antibodies without CD after biotoxin exposures including mold.
Reply | Report Abuse | Link to thisMany with auto-immune disorders have benefited from Low Dose Naltrexone therapy, known as LDN it is a low dose low side effect daily dose of an opiate receptor blocker that results in higher levels of the endorphin Met5-enkephalin which has a immune modulating effect.
Reply | Report Abuse | Link to thisOriginally developed to be used in doses ten times higher than LDN protocols Naltrexone was used for opiate addicts to block receptors 24 hours a day so they derived no pleasure from opiate drugs. Dr Bernard Bihair noticed that HIV/AIDS patients were experiencing greater health and started using Naltrexone in 1/10th the dose to achieve a 4-6 hr blockade of the receptor. This resulted in the immune modluating effects including shrinking Cancerous tumors, healing Crohns patients gut walls, stopping progression of MS symptoms, aleviation of allergies including food and chemical allergies and more.
LDN costs $10 - $25 a month, it is a generic out of patent drug so is not promoted by any pharmaceutical company, but is gaining ground at a grass roots level in the medical community.
http://groups.yahoo.com/group/LDN_Information
If you live in the UK please read www.ldnnow.com and click on the petition link to support the effort to petition the government to fund trials of LDN protocols and gain NHS approval.
"While I think research to understand the mechanism of this disease and other diseases is very encouraging, I'm not at all supportive of the creation of drugs or inhibitors. I think our bodies are trying to tell us something and we should be listening! We should think about returning to a diet similar to our ancestors diet that was followed for millions of years when eating was instinctual. It's that simple--fruit, veggies, nuts and grass-fed animal products in less frequency. "
Reply | Report Abuse | Link to thisThe problem with this approach is that we are not living in the pristine environment free of chemicals that our paleo ancestors lived in. So no it is really not that simple although I favor the most natural means possible there are drugs that in our modern situation are entirely appropriate.
Not having read all 30 pages of comments, I don't know if anyone has already mentioned this, but: I want to suggest another social reason for the late diagnosis or "onset" of CD. Many of the symptoms associated with a "mild" case of CD are uncomfortable and embarrassing, but don't seem *critical.*
Reply | Report Abuse | Link to thisCase in point: I've had what my family called "a sensitive stomach" my whole life. It really was a part of everyday life that I had diarrhea or constipation or felt nauseated. We kept a lot of mint tea and ginger, comic books in the bathroom, and home enema kits on hand. We knew that it got worse when I ate greasy, fatty things like pizza and burgers. Stress seemed to make it worse... but no one ever suggested CD.
It was embarrassing. It made life difficult. I had to be picked up early from birthday parties and sleepovers. I had to be really familiar with anyone we were visiting for more than a day or two. I would get up and leave my boyfriend's house in the middle of the night, rather than risk a "long-term bathroom visit" and embarrass myself.
But still... after 20 years, it was all "normal," and we hardly ever brought it up to the doctor. After I missed two final exams in college because of what I thought was stress-related diarrhea, I had a colonoscopy and was diagnosed with IBS. Nothing really changed, but it was so good to have a name for this embarrassing thing... I had a "medical excuse" I could give to friends when I had to leave the dinner table.
Then at 23, I had a massive unexplained drop in calcium that caused me to seize up and black out (not a seizure). My doctor and I began talking about how often I was sick and how long it took me to get over it.
Then, a roommate with CD suggested I go gluten-free just for a month, just to see if it helped with my digestion. I haven't looked back in over 5 years. I tested negative to a Celiac-Spru blood test, but based on the dramatic changes of cutting out gluten, she diagnosed me as "sensitive to gluten."
My life really has changed--within a month of a gluten-free diet, I was amazed at the improvement in my digestion and the disappearance of massive tension and migraine headaches and that "mental fog" I often felt but couldn't explain. It means a lot to me that I can manage my own wellness.
To bring it back to my original point: I wonder how many leaky guts might be discovered earlier if "discomfort" didn't become a way of life... albeit an embarrassing one.
As one who self diagnosed celiac at the age of sixty-nine when a bad case of the runs hit me while on a cruise in Antarctia, I realized that I was eating more bread than usual. As soon as I took it out of my diet, I felt so much better and my bowels settled down to a more normal functioning. When I have accidently eaten anything with gluten I react so badly that staying away from the culprit is a treat. I guess I have gone through aversion training when anything with gluten is offered. ;o)
Reply | Report Abuse | Link to thisAs someone rather newly diagnosed with Celiac I thank you! I did not have the biopsy, but rather the TTG testing to confirm the diagnosis.
Reply | Report Abuse | Link to thisI appreciate your recognizing that treating this condition with avoidance of gluten is very difficult! As I take every possible caution I still end up with periodic bouts of "gastric distress." Most recently it landed me in the emergency dept only to be told they don't know what the problem is and nothing can be done. But they were keen on offering me pain medication- which I declined as they do not know if there is Gluten in the prescribed drugs.
So the cycle goes.
I know there are many out there just like me. I hope for them as well as myself that the medical community remains passionate about finding some help for us.
Thanks for reporting your efforts and know there is gratitude for your work.
Linda A
Milwaukie, Oregon
WIld Alice at WIld Alice Bars celebrates gluten-free goodness on www.wildalicebar.com. A box of eight costs $16 + $5 s & h. Two flavors: cranberry walnut and apricot cashew. Take them with you! as a meal substitute, energy bar, or hot cereal when crumbled in hot water. Yummy!
Reply | Report Abuse | Link to thisIS THERE ANY POSSIBILITY THAT THE WHEAT DNA STRANDS MAY BE FEWER THAN AROUND 1900. RUMOR IS THERE WERE 6 STRANDS OF DNA THAT HAVE BEEN HYBRID DOWN TO 4 STRANDS. HOW CAN ONE FINE OUT?
Reply | Report Abuse | Link to thisHas anyone had any hair symptoms such as alopecia areata associated with CD? Kindly advise.
Reply | Report Abuse | Link to thisHas anyone had any hair-related synptoms associated with CD, usch as alopecia areata? Kindly advise.
Reply | Report Abuse | Link to thisI've been tested for CD, but it came back negative. Though I know I'm gluten intolerant by symptoms, though not the normal underweight and loose stools, but the opposite and extreme fatigue. Can one get a false negative? Though there are many wonderful GF books, I'm vegan, which makes even more challenging cooking GF, though doable.
Reply | Report Abuse | Link to thisI agree, though I would advocate not eating any grass-fed animal products. I don't normally tout a vegetarian diet, or a vegan diet, but having read The China Study, there is much to be said about becoming vegan, in addition to eating a GF diet.
Reply | Report Abuse | Link to thisIn his article "Surprises from Celiac Disease," Dr Alessio Fasano leaves the impression that many aspects of celiac disease are better understood than is actually the case. For example, readers may have trouble following the explanation of how the affinity of gluten fragments for both transglutaminase and DQ2/DQ8 HLA molecules leads to immune attack on the intestinal lining. This is because no such explanation has been presented and found convincing.
Reply | Report Abuse | Link to thisThat is a sentence from a letter I wrote to the editors. This is a place for discussion of the article, not for me to promote alternative explanations. Within its own framework, the idea that celiac disease is primarily autoimmune (that is, that the immune attack is directed against previously-healthy body structures) has many open questions. This is potentially a fruitful field for young investigators.
I am the main advocate of "The blocked recognition hypothesis," a direct toxicity proposal for the cause of celiac disease. Within that framework, all of the observed autoimmune responses are part of the healing process. Dr. Fasano's "Zonulin hypothesis" is in the direct gluten toxicity category, although it also incorporates primary autoimmunity. Previously proposed, but rejected, direct toxicity ideas were that gluten acted as a botulin-like poison to intestinal cells of those with celiac disease, and that gluten (or fragments of gluten) had lectin-like properties (that it or they bound to specific receptors on intestinal cell surfaces causing a suicidal response).
Again: not all questions are answered; this is an inviting field for more research.
This is fantatic information and should be read by people ewith other autoimmune diseases as wel as those with celiac's. As well as recently diagnised celiacs, I also have had Multiple sclerosos for more thatn 30 years. This article makes me believe that both diseases may be related to the same underlying factors. perhaps they should be some resesrch inot co morbidity of celiacsx and other autoimmune diseases.
Reply | Report Abuse | Link to thisThere has been a fair amount of research on co-morbidity of celiac disease with other conditions. The skin disease 'dermatitis herpetiformis' is now considered a manifestation of CD. There is a sporadic form of ataxia that is considered a manifestation of CD, and there is active debate about what fraction of all sporadic ataxia is CD-related. Temporary autoimmune-like effects on joints after gluten exposure are recognized. Associations with type 1 diabetes and with autoimmune thyroid disease are well established.
Reply | Report Abuse | Link to thisThe two obvious competing explanations for association between CD and autoimmune diseases are either a constitutional factor that predisposes a person to all kinds of autoimmune conditions or that the leaky gut of celiac disease releases "things" into the body that precipitate the other conditions.
And yes, this is an iviting area for further research.
CD & Juvenile Dermatomyositis, a rare life-threatening autoimmune/skin and muscle disease.
Reply | Report Abuse | Link to thisMy 6 year old daughter has been battling juvenile dermatomyositis (JDM) for almost 3 years. She is not yet to remission. In June 2009, I was lucky enough to have a chance meeting with a mother of a girl with JRA whose daughter went into a permanent remission after removing gluten from her diet. Although my daughter tested negative for CD 3 times, the JRA moms insistence and explanation about the IgG ELISA food panel testing prompted me to find out more.
Almost all of the specialists involved in my daughters care told me the IgG test was bunk. One even told discouraged me, saying removing gluten from her diet would be hard. I was willing to try anything because my child would awaken with gut pain 1-2 days every week and her appetite was non-existent even when on 1000mg prednisone/week.
My daughter had fairly significant GI problems: chronic, painful constipation and pneumatosis intestinalis throughout the ascending colon and hepatic flexure that persisted for more than a year. She had 9 biopsies taken in her lower and upper GI tracts. All negative. But, no one had looked in the small intestine or the area of pneumatosis for fear of perforation. After coming off the prednisone, my daughters eosinophils climbed to a 2 year high of 1106.
10 days after removing gluten, egg, dairy from my daughters diet (10/9/09) we saw the first normal looking stool in more than 2 years. At 15-20 days post diet change she was cleaning her plate and asking for and eating snacks. At 20 days post diet change her eosinophils had dropped to 375and dropped to 100 at 50+ days post diet change. Her LDH, a JDM marker, also fell from the 600s to just 250.
Better stillher complaints of tummy pain, leg pain and foot pain disappeared about 3 weeks into the new diet. Her intermittent facial rash disappeared. I think there are many more JDM kids out there who also tested negative for CD but who are suffering like my daughter because gluten continues to be given to them.
Thank you, Dr. Fasano, for this fabulous article!
Excellent article. Many people become confused about the differences between celiac disease and gluten sensitivity. The following link is an excellent video describing the differences:
Reply | Report Abuse | Link to thishttp://www.glutenfreesociety.org/video-tutorial/gluten-sensitivity-what-is-it/
In good health,
Dr. O
I am a 43yr old woman suffering with CD and I also have severe Anemia, which can result in severe complications with my health and possibly death. I am not sure what I can do to get my ferritan level up, but everyone with this disease MUST adhere to the Gluten free diet and do what you can to make awareness for others. The state of Maryland does not have that much awareness that I know of. I will be setting up a blog about giving and getting ideas to help others. Thank you
Reply | Report Abuse | Link to thisPia Marie Lee, Bel Air, Maryland
If CD represents as an auto-immune disorder then is there a correlation to Autism which among other theories is possibly a autoimmune disorder. It would be interesting to see what the incidence of Autism is among sufferers of CD.
Reply | Report Abuse | Link to thisWhat a great, simple to read, informative article. Many thanks for the clear explanation. As someone with HLA2,2 and symptoms, this article helps me understand celiac disease and GSE even if my gastroenterologist doesn't.
Reply | Report Abuse | Link to thisRegards,
http://www.buygenericdrugs.net/diseases/Celiac-Disease/
any one please help me i have a continuous Diarrhea i have this problem for 4 years please any one help me and then i want know this is Celiac disease
Reply | Report Abuse | Link to thisMy wife and I have been using Isagenix products...specifically the Isagenix IsaLean Shake as a nutritional meal replacement. Recently she was approached by someone who knew we used the products and wanted to know more. The woman indicated that Gluten causes an adverse reaction for those suffering from Celiac Disease. She went on to say that her research had told her that the IsaLean Shake was Gluten free. If this is something that can help people suffering from Celiac Disease we would be happy to discuss it with you.
Reply | Report Abuse | Link to thisYou can read a recent blog post I wrote at...
http://blog.cleansebenefits.com/?p=511
You can also read more about nutritional cleansing and replenishing here...
http://www.cleansebenefits.com
My sentiments exactly. Here's another shocking piece of information: Hashimoto's, an auto-immune disease in which your immune system attacks your thyroid and if left untreated will destroy your thyroid, is typically not diagnosed by the general medical community in the USA. Reason, they call it low thyroid and treat you symptoms of low thyroid instead, completely ignoring the fact that your immune system is attacking your thyroid.
Reply | Report Abuse | Link to thisI went undiagnosed for 10 years, was eventually tested after 10 years and never told I had Hashimoto's Disease because my doctor felt that telling me I had low thyroid was sufficient. I heard through her nurse a year later that my test results from the previous year showed Hashimoto's Disease. I immediately switched to a doctor who understood Hashimotos and within one month started feeling like a human being again.
If you are told that you have low thyroid, INSIST that your doctors test you for: Antithyroglobulin CPT Code = 86800, or Lab Core code 006692
Thyroid Peroxidase CPT Code = 86376 or Lab Core code is 006676. Most low thyroid is Hashimoto's and doctors routinely over look this. If your doctor does not understand Hashimoto's, move on.