I'm a big believer in fun, especially when it comes to eating. And just because your child is on a gluten-free diet doesn't mean he or she should be deprived of one of life's greatest pleasures. It will require a little extra work on your part, but its well worth it. Don't think your choices are limited to carob and fruit-juice tofu, and don't limit yourself to the health food stores (unless that's your preference - I should have mentioned that I'm big on fun, but I'm also big on junk food; I think its an important part of growing up). Learn to read labels carefully, and to call manufacturers. Even if a label appears to be gluten-free, you should call the manufacturer to make sure there are no hidden ingredients, and to ask about manufacturing procedures. Many chocolate bars, for instance, are coated in flour to keep them from sticking to machinery and wrapping. More tips, additional information on gluten-free treats, and lists of gluten-free junk food can be found at www.celiac.com and in Danna's book, Kids with Celiac Disease.
I get hundreds of e-mails each month from parents of kids newly diagnosed with celiac disease or beginning the gluten-free/casein-free dietary intervention program for autism or ADHD. I thought it would be helpful to share some of these e-mails with you... Dear Danna: My four-year-old son is autistic, and were trying the gluten-free/casein-free dietary intervention program. There are no health food stores near me, so I have to drive an hour to get all of his food. Also, its very expensive. I dont know if we can afford this diet. Do you have any suggestions? Lisa L. Dear Lisa: Dont feel locked into shopping at health food stores. With the exception of baked goods and mixes (bread, cakes, cookies, etc.), you can do most, if not all, of your shopping at a regular grocery store. You can even buy generics! The first thing you need to do is become familiar with the safe and forbidden ingredients. To learn whats allowed and whats forbidden on the gluten-free diet, there is an excellent list on www.celiac.com -- you may want to print it out and take it to the store with you. Then learn to read labels carefully. If the ingredients appear to be okay, call the manufacturer (theres usually a toll-free number on the package - I bring my cell phone into the store with me so I can call before I buy) to confirm that the product is, in fact, gluten-free/casein-free. Youll find that the list of things he can eat is a lot longer than the list of things he cant! Happy shopping.... Dear Danna: My daughter is six and has always had terrible diarrhea. My brother and I both have celiac disease, so I figured she does, too. I dont want her to have to go through all the testing, so Im going to put her on a gluten-free diet and see how she responds. How soon should we expect to see improvement? Pam F. Dear Pam: I know its tough to handle the thought of putting our kids through testing, but proper testing is essential. Your daughter must be on a gluten-containing diet in order for testing to be accurate, so I would urge you to get her tested quickly, before putting her on a gluten-free diet. Id recommend doing the antibody screen (a blood test) first; if its positive, Id encourage you to have an intestinal biopsy done on her. Believe me, I know its hard to put our children through these tests, but its important that you know for sure, and proper testing is crucial. Dear Danna: I suspect my nine-year-old nephew has celiac disease, but the doctors wont test him because hes in the 70th percentile for height and weight. He has gas and bloating, and occasional bouts of diarrhea. My brother (his dad) had celiac sprue as a child, but doctors told him he outgrew it. Drew S. Dear Drew: First, people dont outgrow celiac disease (celiac sprue). Decades ago it was thought that they did - but now we know that celiac disease is a lifelong condition (sometimes symptoms may appear to fade away, but damage is still being done to the small intestine). Your brother should be properly tested (testing is much better now than it was when he was a child). If he does have celiac disease, your nephew is at greater risk for having it, too, since celiac disease is a genetic (inherited) condition, and youre right to suspect it. Sometimes doctors are reluctant to test for celiac disease - its extremely important to demand testing - if the doctor wont test, find one who will. (By the way, my son was in the 75th percentile for height and weight when he was diagnosed - some adult celiacs are actually overweight.)
If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two aspirin and Keep away from children.
The transition from summer to back-to-school is paradoxical. On one hand, summer means sleeping in, adventuresome vacations, evenings free of homework and obligatory assignments, and a chance for parents to take pleasure in their kids carefree, relaxed summer schedule (or lack thereof). On the other hand, mantras like, Im bored, Are we there yet? Theres nothing to do here, and the non-stop sibling bickering that seems to escalate when one child dares to breathe the same air as another has some parents singing, Its the most wonderful time of the year a good four months before Christmas.
But its not always the most wonderful time of the year. For parents whose children cant eat gluten, sending kids to school can create an entirely new dimension of anxiety that extend far beyond the typical back-to-school blues: What will he eat for lunch? What if there are birthday parties and my child cant participate? Will kids make fun of him? Will the teacher take time to understand his condition? What if he eats the Play Doh? How can I make this easier for him? This is harder on you than it is on your child If your child is newly diagnosed with celiac disease, or is new to the gluten-free diet, I know youre thinking, Oh, no its not! She just doesnt understand how hard this is. When I speak at conferences and tell parents this is harder on them than it is on their kids, I inevitably have one or two - always the parents of newly diagnosed celiac kids - who respectfully (and usually temperamentally) disagree. They tell me I dont understand. Believe me, I do understand. But also believe me that this is harder on you than it is your child. Its harder, because of the very nature of being a parent. We love our kids so intensely that every pain they experience hurts us ten times more. Nothing breaks our hearts more than to know that our children may experience heartache. But remember, one of our most important jobs as parents is to teach our children how to deal with unpleasant experiences and emotions. As Anne Bronte said, If you would have your son to walk honorably through the world, you must not attempt to clear the stones from his path, but teach him to walk firmly over them.
Tips to make it easier
Give your child control of his diet. Yep, even if hes just two years old. Anyone who has heard me speak or has read either of my books knows that Im an absolute nag about telling you to give your child control of his diet, because if he doesnt control his diet, his diet will control him.
Educate your teachers and principal. Set a meeting with your childs teacher(s) and principal to explain your childs condition and diet. The best time to do this is a day or two before school starts for the year. The teachers are usually at school setting up their classrooms, but theyre not yet distracted with new students, parents, and classroom responsibilities. Provide the teachers, principal, and the school nurse, if you have one, with clear, concise written materials explaining celiac disease and your childs diet. Some people find it helpful to give the book Kids with Celiac Disease to the school, so that the nurse, teachers, and principal can more thoroughly understand the condition and diet. Make sure they understand the severity of accidental gluten ingestion. Remind them that they should contact you if there are any questions, rather than taking a chance.
Lunches: use good judgment. Most of the time, the people in charge of preparing food for children in a preschool or school setting are already used to dealing with lactose intolerance, peanut allergies, and other dietary restrictions. Talk to the dietitian or person in charge of food preparation. Go over the menu plans, discuss the foods your child can and cant have, and talk about the importance of using clean utensils to avoid cross-contamination. If you feel comfortable with the persons understanding and acceptance of the diet, give them the opportunity to accommodate your childs special diet. You always have the option of sending in your own meals if you think its not working out. If you are interested in your childs legal rights to reduced-cost school lunches, see Kids with Celiac Disease under Section 504.
Talk to the adult lunchtime supervisors. Kids will swap food. Its an age-old tradition, and its not likely to stop with your child. Aside from the likelihood of getting gluten, your child may end up hungry. Sometimes your childs goodies are better than the other childs, and it makes your child so proud that shell gladly give them all away, to be left with nothing. So the best you can do is explain to your child why she cant trade food with her buddies, and make sure the lunch area monitors are keeping an eye out for swappers.
Out of snack and lunch ideas? See Kids with Celiac Disease. Its loaded with snack and menu ideas, many of which travel well in lunch boxes and bags.
Give the teacher a stash of gluten-free treats. A large bag of Halloween-sized individually wrapped candies works well, and because theyre individually wrapped, the teacher can keep them in a cupboard without the threat of ant invasions. Let the teacher know that these treats are to be used any time there is a special event during which treats will be served. Make sure the treats are your childs favorite; you dont want him feeling like hes being short-changed.
Get a schedule of classmates birthdays and scheduled holiday parties. Teachers are glad to provide you with a listing of everyones birthdays. This way you know in advance when there will be parties. You can coordinate with the other childs parent, or send your child in with her own cupcake or treat. If theres a surprise event, your child always has the stash of candy youve given the teacher.
On your childs birthday, bring a popular gluten-free treat for the entire class. Its best not to risk celebrating your childs birthday with gluten-free cupcakes. Its possible that everyone in your childs class might like your homemade gluten-free cupcakes. On the other hand, there may be one kid who, for whatever reason, takes one bite and spits it across the classroom, declaring, What IS this stuff? You can bet your child wont forget that incident for a very long time. Its best not to risk it. Instead, bring in ice cream bars or ice cream sundaes. Or, if you cant do frozen foods, bring cutely decorated candy bars or goodie bags filled with candy (brands that everyone knows). It will bring your child immense pleasure to share treats with the class that she can eat too (and kids like that stuff better than cupcakes anyway!). Of course, you will want to be sensitive to any of your childs classmates who might have peanut or other allergies, and choose treats that everyone in the class can enjoy.
Ask for liberal restroom privileges. Many teachers restrict the number of times children are allowed to go to the restroom, or they ask children to wait until a more appropriate, less disruptive time. Let the teacher know that your childs condition may require a hasty trip to the restroom, and that he should under no circumstances be restricted from going. You may even want to establish a little code between your child and her teacher, so that he can inconspicuously dismiss himself. Its a little less embarrassing than having to ask.
Consider talking to the parents at the parents-only back-to-school night. Most schools have a back-to-school night for parents only. This is a great time to talk to the other parents about your childs condition and diet. Not only will you be helping them to understand and accommodate your childs diet, but you will be educating dozens more people about celiac disease - something we should all be doing on a regular basis. Dont be mad when people dont accommodate your childs diet. Its going to happen. Someone will have surprise treats for the class that your child cant eat, and the teachers secret stash will be empty. Or someone will decide its baking day, and your child will be the only one not sampling the goods. Dont be annoyed, offended, or angry. These people arent intentionally trying to leave your child out, nor are they being insensitive. They simply forget sometimes! Most importantly, remember that your child is learning from your reactions. He will be in situations like this for the rest of his life - teach him to be gracious, politely declining the treats offered to him, and to accept the fact that this is just one of those little stones in his path of life that hell need to learn to step over...with a smile and the knowledge that people generally mean well.
This article appeared in the Spring 2005 edition of Celiac.coms Scott-Free Newsletter. Celiac.com 06/08/2005 – Theres no point in enjoying the improved health and vitality youll experience on a gluten-free diet if youre just sitting at home pining away for excitement because youre afraid to venture too far away. You have to live life to its fullest—you should be livin la vida loca! Theres no reason whatsoever to limit or, worse yet, give up travel because of this diet. Traveling wheat-free/gluten-free might be a little intimidating at first, but really, it just takes a little more planning, and sometimes an extra suitcase or two. Pre-Travel Checklist Before you leave, research your destination: Check with a support group in the area youre visiting to see if they have a list of celiac-friendly restaurants or grocery stores. Also search the St. Johns Celiac Listserv archives for frequent posts about gluten-free-friendly restaurants. You might want to go to the Internet and look up your destination city to see if they have one or more health food stores. If they do, call the store(s) and ask what gluten-free products they carry—if you have a favorite product, ask them to order it for you before your trip so they will have it in stock when you arrive. Be aware of legal considerations when crossing borders: Some countries have laws about what foods can be imported. Make sure you know what the laws are, and dont try to bring foods with you that might be confiscated. My family and I had an – umm – interesting experience at the Mexican border when we brought gluten-free pancake mix in an unmarked, vacuum-sealed plastic bag. Know the language (at least key words): Learn at least a few key words of the language spoken in the country youll be visiting. Make sure you can say wheat, flour, and other key words. Bring restaurant cards written in the language(s) of the country youre visiting (see www.celiactravel.com), or use translation software to create your own. Ask for rooms with a kitchenette, or stay in a condo: Even a small kitchenette with a microwave, refrigerator, and sink will make your life a little easier. Ship food to yourself: If youre traveling a long distance or are going to be gone for a long period of time, consider shipping some of your favorite products to your ultimate destination so theyre waiting for you when you arrive. Carry a "kitchen in a suitcase": If youre accustomed to making your breads, cookies, and other baked goods from the mixes that you order online or find in specialty stores, bring them with you, as it may be difficult to find them at your ultimate destination. Bring your specialty tools or appliances, too, like your bread slicer, if you plan on cooking while youre away. Grab your gadgets: Manufacturers offer some ultra-convenient travel gadgets these days, even for the traveling eater. Most sporting goods stores carry a small refrigerator (there are several brands) that plugs into the cigarette lighter of your car, making it easier to bring yogurt and other perishables on long drives. And we all know how toasters can present a problem since "regular" toast seems to spray its crumbs everywhere, contaminating them for gluten-free eaters. A travel toaster available on the Internet: (www.fsmarketplace.company.uk/traveltoasters) eliminates the worry—just take your own and youre set. BYOF: Even gluten-free bread travels well if you slice it and pack it in a hard plastic storage container. Hard-to-find cereals, pretzels, and favorite treats—even pre-baked frozen cookies—make great snacks en route or when you arrive. Dont forget to pack food for the trip itself, as well as food for your stay at the destination. There are grocery stores everywhere you go: When you arrive at your ultimate destination, stop in at the local grocery store and stock up on some of the basics. Dont forget to buy aluminum foil and resealable bags, which work well to store leftovers from restaurants, or any foods that you may have brought with you. Remember your restaurant rules: Use the tips mentioned in my books or in past issues of Scott-Free for eating out at restaurants, since youll probably be eating out more than you do when youre at home. If youre traveling to certain places in Europe, you might be pleasantly surprised to find that in some countries like Sweden McDonalds offers two types of hamburger buns: gluten-free and "regular." Getting There When planning how and what youre going to eat on your trip, you have to first decide where youre going and how youre going to get there. How much and what you bring depends on whether youre taking planes, trains, or automobiles. Driving: Driving allows you the most flexibility, and is easiest when youre trying to accommodate a restricted diet. If youre driving in the United States, there will most certainly be national fast-food chains all along the way. Even if you dont want to rely on greasy burgers and fries as a staple for your entire drive, you know that you have a backup—just in case. National restaurant chains (even those that are not of the fast-food, greasy-burger variety) have branches in all major cities—find out which restaurants are along your driving route (you can check www.mapquest.com or a similar Website), and check the restaurants Web sites or contact them for their lists of wheat-free/gluten-free products (this is where your three-ring binder with restaurant lists that you leave in the car comes in handy). There are also commercial gluten-free restaurant guides available, such as the one at www.celiac.com. Most important, BYOF. You will probably bring snack foods to munch on while you drive, so just make sure youre loaded with snacks that are easy to eat in the car, travel well, and of course, meet your dietary restrictions (and dont forget the paper towels or wet wipes!). Flying, cruising, and riding the rails: Theres less flexibility in how and where you can eat when youre at the mercy of a commercial airliner, ship, or train—but you still have a number of options. Many commercial airlines offer a selection of specialty meals, including gluten-free ones. Be careful, though, and read the labels if the food has them, because sometimes our gluten-free meals have come with fluffy, doughy bagels (that obviously arent gluten-free). If mistakes are made, dont be mad. They tried, and at least they considered having a gluten-free meal as an option. Be glad they made the attempt, and consider writing a polite, gratuitous letter to the food supplier offering information on whats gluten-free and what isnt. These days, airlines restrict the number of carry-on bags, so youll have to be more efficient in packing snacks and meals for the flight. Snack items that you might include in a sack lunch usually make good take-along foods for the airplane. Cruise ships always have executive chefs. Theyre accustomed to accommodating restricted diets, some of which can have dangerous consequences if mistakes are made, so they take the subject very seriously. By contacting the administrative offices of the cruise line several weeks in advance, you can arrange for the chef to provide you gluten-free meals throughout your cruise. Trains are tougher, since most of the foods found in café cars are usually along the lines of packaged sandwiches, croissants, pastries, and other oh-so-not-nutritious goodies. I highly recommend bringing food on the train, and not just because of your restricted diet, if you know what I mean.
Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response. "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
The research was funded by the National Institutes of Health.
Read more at: Sciencedaily.com
Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown. To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease.
The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016.
The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location.
This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries. The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.
Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
3 cups ripe fresh tomatoes, diced
1 cup shredded green cabbage
½ cup diced yellow onion
¼ cup chopped fresh cilantro
1 jalapeno, seeded
1 Serrano pepper, seeded
2 tablespoons lemon juice
2 tablespoons red wine vinegar
2 garlic cloves, minced
salt to taste
black pepper, to taste
Purée all ingredients together in a blender.
Cover and refrigerate for at least 1 hour.
Adjust seasoning with salt and pepper, as desired.
Serve is a bowl with tortilla chips and guacamole.
Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.
Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs).
However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease.
Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39).
They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature.
Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis.
Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023
I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated.
I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room.
Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen.
I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.
"I've been there and still might have celiac disease." If you really DID have celiac disease? You still have it, and always will. There is no evidence that the underlying problems (autoimmune failure, leaky gut, etc.) ever can heal themselves, or be healed, beyond the random miracle cure at Lourdes.
There is, as best I've been able to find, absolutely no one out there who can say why sometimes an infant will be diagnosed with celiac, which then "goes away" for thirty or forty years, and then comes back with a vengeance. Indicating the underlying problems were there all along--and may have been causing all sorts of damage for all the years.
Think carefully about that. Celiac is like radiation poisoning: Every exposure adds up, over your whole lifetime, and pushes your autoimmune system further out of control. Even if it seems fine at the time.