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    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

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    Janet Doggett
    This article appeared in the Winter 2008 edition of Celiac.com's Scott-Free Newsletter.
    Celiac.com 07/19/2008 - When I was 6 years old, I lived in Dallas, Texas, and I had a best friend named Judy. It was at her house that I first ate a bagel. I fell in love with its chewy, crusty texture. I didn’t know much at that age, but I knew that I loved eating those bagels – I couldn’t get enough.
    I also knew, from a very young age, that something was wrong with me. Something that they would one day discover and name after me. I had stomachaches all the time. I can’t remember a time when my stomach didn’t hurt at least a little bit.
    “You were so healthy when you were young,” my mother is fond of saying. Painfully shy and uncomplaining–yes. Healthy, no. We were just blissfully unaware of what lay in wait for future doctors to discover.
    In high school, I was anemic, and experienced several bouts of tachycardia that were written off to anxiety. And then after I was married, I twice struggled with infertility. Later, the “stomachaches” returned and worsened and doctors removed my gallbladder thinking that stones were to blame and then my uterus thinking it might be hormones causing my symptoms.
    Along the way, in trying to diagnose me, doctors discovered insulin-dependent diabetes, low thyroid and high cholesterol. I also have bipolar disorder. I take a combination of 13 medications a day for my health maintenance, and I’ve been to the hospital at least 18 times in the past year. But still, I felt that they hadn’t hit upon that one thing that was really wrong, that was causing my stomach to hurt so badly.
    Then, two years ago, I had added “severe bone pain” to my ever-growing list of symptoms and went to see a rheumatologist. He refused to believe it was a simple case of arthritis and tested me for malnutrition. I had no Vitamin D in my blood – a tell tale sign that something was wrong with my gut. Next came the antibody test and then a biopsy that proved that the tiny villi that lined my intestines were indeed “flattened.” We had a diagnosis after only 10 years of actively seeking one. I had celiac disease, an auto-immune disease where you can’t digest wheat or gluten, the wheat protein.
     “What? I can’t eat bread? I can’t have bagels?”
    I was sure I would starve to death when I heard that this removal of all glutens from the diet was the only treatment for the disease whereby the lining of a person’s intestines is badly damaged. If left untreated, it can lead to things like malnutrition, brain ataxia, osteopenia, and eventually a cancer called lymphoma.
    More specifically, what was happening was the lining of my intestines was shriveling, shrinking in reaction to the gluten in the bread or other products made with wheat. The damaged intestines repair themselves with the removal of gluten from the diet, but it must be strictly adhered to for life. Even the smallest taste of wheat or gluten would immediately return my villi that line the intestines to a flattened mass. 
    At first I was afraid to eat anything. All day long, gluten loomed at me from dark corners. At night I dreamt of bagels and pizza.
    The problem is that gluten is hidden in many foods. Obviously it is in bread, bagels, pizza, pasta, most fried foods (all wheat flour-based products) but it also is in many processed foods like canned soups and salad dressings, ice creams, foods made with caramel color, malt, barley, rye, HVP, spelt, and the list goes on. It also means that I must use separate utensils to butter my gluten-free bread, separate pots and pans to cook my food and separate colanders to drain my corn or rice-based pastas. Even certain toothpastes and lipsticks are suspect.
    To have celiac disease means that you no longer can rely on that convenience factor of ordering take-out or eating fast-food. It means that you have to be prepared each and every time you eat, bringing with you sauces and dressings, buns and breads.
    You learn, too, that part of the reason bread is bread is because of the gluten. It is what holds it together and gives it its chewy texture. Breads made from rice and corn and the like are mealy and fall apart. They must be kept frozen and then toasted, and even then are just not the same.
    Eating out is risky. You must carefully research a restaurant before you go, finding out if they offer any gluten-free foods and usually speaking to the manager and the chef. I usually go to one of two restaurants that I know to have gluten-free menus. Even then you risk cross-contamination or accidents. The other day, I found a crouton in the bottom of my salad bowl. This can be disastrous to a person with celiac disease.
    It signaled all things dark and dastardly, and sure enough, later that night, it started: a gnawing, a clawing from the inside out. Something akin to severe hunger but more raw than that. Then it settled in the pit of my stomach and churned into a piece of broken glass. A reaction to gluten can feel as though every time you move you’re stabbed by a shard of glass until you’re bleeding from the inside out. This can result in severe projectile vomiting and other gastrointestinal symptoms that are mostly unmentionable.
    The Other Celiacs
    There are those people who have celiac who are really upbeat about it all – perky even. There are also celiac patients who have mild or no symptoms of the disease. I’m not one of them. They will tell you that we are among the lucky ones, the ones who know they have the illness, the ones who have been diagnosed and now have all this healthy good-for-you food at our disposal. They laud the nature of the illness whereby the only treatment is dietary and does not require surgery or other invasive means. But if you ask me, I would much rather have one surgical procedure that would “cure” me and be able to digest wheat the rest of my life than to have to make such a lifestyle overhaul. To have celiac is to be socially awkward at best and to be in constant pain at worst. It is not something one wishes to have.
    The worst part is no one (other than another celiac sufferer) understands, from the family member who wants you to try “just one bite” of her homemade streusel to the restaurateur who mistakes white flour for a non-gluten product because it has been “bleached” to the medical professional who thinks it’s a simple allergy rather than an auto-immune disease. The lack of awareness of celiac is astounding given that nearly two million Americans are said to suffer from it.   The problem is it is widely under-diagnosed. One in 133 Americans are said to have celiac disease but only one in 2000 knows they have it.
    Lack of Awareness
    When we are little kids, we are taught that doctors are there to help us. I have very few doctors who actually help me. I had one doctor -- an endocrinologist – say that they would figure it all out at the autopsy. To have a chronic illness is to realize that there is no cure. You will not be cured. You will learn to live with some amount of pain and illness.
    This lack of awareness of the disease and its effects even among medical professionals is unnerving. I’ve shown up at hospitals vomiting blood, writhing in pain with blood pressure so low I should be crawling yet I’ve been told nothing was wrong with me, that all of my blood work was “perfectly normal” and therefore I should just go home and rest.
    Of course if they had checked my gluten antibodies, they would have found that they were twice as high as was normal, pointing to an accidental ingestion of gluten, which sent my body into a tailspin of auto-immune hell. Yet there is no “auto-immunologist” to which I can turn for help.
    What’s even more frustrating is that celiac disease is not a rare illness – it is estimated that it could even affect three million Americans!
    Lessons Learned
    I dream of bagels that I can digest that taste good. I dream of hospitals where treatment comes without scrutiny and care comes with respect.
     And I dream of a place I can go and be welcomed where “everybody knows the name” of celiac sprue. A place where people understand that it is not a simple thing to just“eliminate gluten” from one’s diet as gluten – the wheat protein – isin many, many foods, some obvious, yes, but many hidden, too.
    In the meantime, I’m learning to eat to live and not the other way around. And I’m enjoying the simple things in life – the friends who will drive far enough to find a gluten-free restaurant; the same friends who won’t devour the bread basket in front of you!


    Rick Lenger
    Celiac.com 10/12/2009 - It has been 9 months since my celiac diagnosis. It seems hard for me to believe that until January 23, 2009 I had never even heard of celiac disease. I have made up for lost time in the past few months. Hopefully, my story will help others who are newly diagnosed with celiac disease to hang on to hope and be encouraged that things are going to get better – much better as they move into a gluten free lifestyle. 
    In 1971 I had a panic attack. I have never been the same since that day. I won’t go into the details of it because most people know what a panic attack is like.  So I had a complete physical which included blood panels for the first time. When I got the results I found out I had an extremely elevated alkaline phosphatase level (400), normal is 80-130. My first thought was, “What the heck is alkaline phosphatase?”  The doctor was alarmed.  He ran more tests and suggested a liver biopsy.  He thought I might have liver cancer. No liver disease was found. From that panic attack until my celiac diagnosis I was always anxious about my liver. I also fought the fear of more panic attacks.   Nothing was ever conclusive. It just hung out there for over 35 years.  Every time I changed doctors and had my blood tested I went through the same series of tests and concerns. Nothing definitive was ever diagnosed.  Finally, my doctor told me my elevated counts were “normal for me.”
    Fast forward to the year 2003.  Without any reason I lost 20 lbs. over an 8 week period. I thought it was kind of cool to be “skinny”. I had always being kind of “doughy.” When I had a physical I found my alk-phos was now over 400.  I was anemic and more fatigued than ever.  My doctor wanted me to have a colonoscopy and an endoscopy. He said he was more worried about the anemia than the high alkaline phosphate. I had a colonoscopy, but refused the endoscopy on grounds that I couldn’t bear the thought of having a tube put down my esophagus.  What a mistake!  I could have gotten this diagnosis 6 years earlier.  The colonoscopy revealed no disease. When I did finally have an endoscopy in 2009 I was totally sedated and the test took about 4 minutes. It was the easiest test I’ve ever had.  My doctor thought I was depressed and put me on anti-depressants.  After adjusting to the meds I think I felt a little better, but deep down I knew something major was going on.  I figured if I were the President I would be sent to the Mayo Clinic for a couple of weeks and they would find out what was plaguing me. I thought my problem could be found only by the best doctors in the world and it would be at great expense – more than I could afford, so I decided to just live the best I could.
    Before my diagnosis I was not absorbing many, if any, nutrients.  At 6’2” I was a gaunt 156 lbs.  I had rapid heart beat, shortness of breath, fatigue, anemia, terrible muscle cramps all the intestinal issues known to man. Numerous blood counts were way off. The 98 lb. weakling at the beach could have kicked sand in my face all day long. My wife told me she couldn’t look at me anymore. It’s hard to look at someone who is suffering from serious malnutrition.  Everything I ate went right through me.  I didn’t think about it at the time, but as I reflect back on it I know I would have died by now if I hadn’t gotten off the gluten. Now I can see signs of celiac since childhood. I was delayed in reaching puberty until I was a junior in high school. I also had fears that we not reasonable.  There were some things going on neurologically for sure.

    I began feeling better within a few days after being diagnosed and going gluten free last January.  My weight began going up, and I just knew the anemia would go away and so would the high alk-phos.  6 weeks after diagnosis (March 2009) I went in for a blood test.  I was convinced the bloodwork would show normal levels in every category. I was proud and giddy.  I couldn’t wait to get the results.  Surprise, surprise!  The blood count for anemia had not changed and the alkaline phosphatase was over 600! What the heck was going on!  At least I felt better.
    I stumbled across a couple of articles on the internet about high alkaline phosphatase in celiacs and possible reasons.  Many celiacs have low calcium and vitamin D, and in some cases it causes high alk-phos.  Without getting too technical it seems that the alk-phos plays a role in bone growth and can go into overdrive when calcium and Vitamin D are extremely low. The solution for us may be in taking lots of calcium and Vitamin D supplements.  I know this is controversial, but I decided to go directly to the source of vitamin D (the Sun) for 15 minutes of sunlight each day.  I also have been taking a great gluten free calcium/magnesium supplement for the past 6 months.  Last week I went in for more bloodwork.  I know I continue to feel better all of the time, but after my last blood work I’m a little nervous about the actual results.  The nurse called me the day after the blood was drawn and told me my count for anemia is now in the low normal range and the alkaline phosphatase is 300!  It had dropped 300 points in 6 months.  I think I’m on to something.  I feel like I’m on the right track and will continue the supplements. I haven’t mentioned how low my cholesterol was in January.  The LDL was 33 and the HDL was 18.  The total cholesterol was 61. The doctor said it was the lowest cholesterol he had ever seen! Now it has gone up to a total of 140!  Something is definitely working!  I think just being gluten free for 9 months has been better than anything else, but I continue to be hopeful about the calcium and vitamin D supplements.
     I have gained 50 healthy lbs. since discovering I’m a full blown, card carrying celiac. I’m working out every other day with weights and I figure of the 50 extra lbs. about 25 of it is muscle and the rest is fat.  Oh well.  I do look better.  My wife can look at me again and I can even look at myself once in a while. I had no idea what it was like to feel normal.  Good things can be found through every struggle. Were it not for these trials I would not have found my faith and learned to trust God. I wouldn’t change that for anything. Everything happens for a reason. I do wonder what I may have done with my life had I been gluten free from birth.  I don’t spend too much time thinking about it, though, since I can do nothing to change it. I consider it miraculous that I could have been in education as a teacher and administrator for 32 years before I hit the wall in 2005.   I’m 60 years old now.  I really look forward to the future. I feel like my best years are ahead of me.


    Jefferson Adams
    Celiac.com 06/25/2014 - Chefs can be instrumental in guaranteeing a gluten-free dining experience for people with celiac disease. However, otherwise competent and well-meaning chefs can get some basic things wrong about gluten-free food for people with celiac disease, including:
    1) The Culprits are Wheat, Rye and Barley
    Did you know that, in addition to avoiding anything made with wheat, or wheat flour, people with celiac disease can’t eat anything made with rye or barley?
    In a 2012 quiz, fewer than half of the chefs at a major culinary event could name a grain, other than wheat, that was harmful to people with celiac disease. So, it’s rye and barley, in addition to wheat. Got it?
    2) Cross-contamination is a Real Problem
    The tiniest amounts of gluten, anything over 20 parts per million, can cause real and serious problems for people with celiac disease.
    Eating gluten causes things like stomach cramps, nausea, dizziness, diarrhea and vomiting, and other unpleasantness for people with celiac disease. No chef wants a patron to leave feeling like that. That’s why it’s so important for any chef or cook offering gluten-free food owes it to it’s patrons with celiac disease to get gluten-free right.
    3) Gluten-free Ingredients Don’t Guarantee Gluten-free Food
    Once chefs master the basics about what is or is not gluten-free, the next step is to avoid cross-contamination when preparing, cooking and serving gluten-free food.
    Do you cook gluten-free pasta in the same pot of water as regular pasta? Do you make gluten-free pizza in the same prep area or oven as regular pizza? Do you thicken soup, or sauce, or gravy with flour? Do you put croutons on salads? Do you cook regular and gluten-free foods in the same oven or grill? Do you use the same water to boil regular and gluten-free pasta?
    If so, you are adding gluten to otherwise gluten-free food. That’s a big no-no!
    4) Best Practices for Guaranteeing Gluten-free Food
    Practices like those listed above are part of the cross-contamination problem faced by so many people with celiac disease. Remember, there’s no such thing as ‘a little gluten’ to people with celiac disease. To make sure you get it right, know the culprits wheat, barley and rye, be vigilant and watch for cross-contamination. Also, be sure to design and adopt a list of best practices for your particular kitchen that will guarantee a gluten-free dining experience for your patrons with celiac disease.
    By all means, please feel free to share your ideas about what chefs get wrong, and/or can do to ensure a safe gluten-free dining experience for people with celiac disease.

    Jefferson Adams
    Celiac.com 11/21/2014 - When most people think of celiac disease, they think about gastrointestinal symptoms. However, researchers have documented a number of other medical conditions that are associated with celiac disease, and which improve when patients follow a strict gluten-free diet.
    The recent case of a 75-year old man who experienced a dramatic recovery from Parkinson's disease after eliminating all forms of gluten from his diet for three months, has researchers thinking about the possibility that gluten sensitivity may be related to Parkinson's disease.
    In fact, there is some evidence that patients with epilepsy and other conditions may benefit from ketogenic low carb and gluten-free diets.
    The ketogenic diet is a high-fat, low-carbohydrate, and adequate protein diet developed 90 years ago at the Mayo Clinic. The high fat content creates ketosis, which appears to prevent seizures.
    In addition to the ketogenic diet, there are several other high-fat, low-carbohydrate diets for seizure control: low-glycemic-index, medium-chain triglyceride, and modified Atkins diets. All require medical supervision and vitamin and mineral supplements.
    In another example of food serving as medicine, high fat low carb ketogenic diets increasingly are being used to control seizures in epilepsy patients.
    As reported in Medscape, ketogenic diets made a significant difference for many patients with epilepsy who cannot control their seizures with medication.
    In one study, more than 20 percent of the patients used the traditional ketogenic diet, while the rest used a modified Atkins diet that included medium-chain triglyceride supplements. These patients saw dramatic improvements.
    In addition to reducing the number and severity of seizures, 65 percent of patients felt "more alert or brighter," while 35 percent had "more energy." Many of the patients also had shorter seizures when they occurred.
    Sources: 
    Epilepsy Behav. 2014;37C:59-70. doi: 10.1016/j.yebeh.2014.05.031 J Neurol. 2014 Feb;261(2):443-5. doi: 10.1007/s00415-014-7245-7

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    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au