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Celiac.com 07/25/1996 (Updated: 12/29/2020) - Like many people with celiac disease (it's an autoimmune disease and not a wheat allergy or the same as gluten sensitivity, gluten intolerance, or sensitivity to gluten), I spent a lot of years and money and endured many tests and misdiagnoses before doctors finally discovered that I needed to avoid gluten (including all gluten containing ingredients). Gluten is a protein found in gluten containing grains that include wheat, rye, and barley, and is often hidden in processed foods. To treat my celiac disease I had to go on a gluten-free diet for life, which meant that I had to learn to read food labels, and I ate mostly naturally gluten-free foods like meats, fruits, nuts, vegetables, gluten-free breads, and foods that were labeled gluten-free or made using gluten-free grains. My symptoms, which included weight loss, abdominal pain (especially in my middle-right section while sleeping), bloating, and long-term diarrhea, slowly disappeared. Because of the large variety of symptoms associated with celiac disease, and the fact that many celiacs have few or no symptoms, diagnosis can be very difficult, which is why is still takes an average of 6-10 years to get diagnosed. Most medical doctors are taught to look for classic symptoms and often make a wrong diagnosis, or no diagnosis at all. During my doctor visits my diet was never discussed, even though most of my symptoms were very typical, and greatly related to food digestion. A simple (and free!) exclusionary diet would have quickly revealed my problem. An exclusionary diet involves eliminating wheat, rye, oats, barley, dairy products, soy and eggs for several weeks, and recording any reaction as you slowly add these foods back into your diet. Unfortunately it took my doctors over two years to make a diagnosis, and during that time I was misdiagnosed with Irritable Bowel Syndrome (IBS), told that I could have cancer or a strange form of Leukemia, treated for a non-existent ulcer with a variety of antibiotics that made me very ill, and was examined for a possible kidney problem. I also underwent many unnecessary and expensive tests including CAT Scans, thyroid tests, an MRI, tests for bacterial infections and parasites, ultrasound scans, and gall bladder tests. Ultimately the only reason I every got my diagnosis was because I ended up reading something about it in a book on nutrition, which led me to ask my doctor to be screened for it. I was finally diagnosed via a blood test for celiac disease, followed by a biopsy of my small intestine (which is not as bad as it sounds). A full recovery took me 2-3 years, and during that time I also had temporary food intolerance issues to things like dairy (casein), corn, tomatoes, and chicken eggs. During the 1-2 year time period after going 100% gluten-free I was thankfully able to add those things back to my diet. I created Celiac.com to help others avoid a similar ordeal. I also want to provide people who know they have the problem with information which will improve their quality of life, and broaden their culinary horizons. To do this, I have compiled information from a large variety of sources including medical journals, books, doctors, scientists, and news sources, and posted it all right here. Many of our articles are written by medical professionals such as nurses, doctors, and other celiac disease experts.- 140 comments
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From Blizzard to Blackout—A Celiac News Saga
Shelley Case, B. Sc., RD posted an article in Autumn 2003 Issue
Celiac.com 01/20/2004 - Lets begin in February, 2003. A major press conference was planned for February 13th, to announce the publication of the Prevalence Study in the Archives of Internal Medicine. We spent seven months of detailed planning with the media, patients and parents, and when the day finally arrived, it was accompanied by a major snowstorm. The press conference did happen, but a number of the press was sidetracked to cover the snowstorm. This, however, did not prevent celiac disease from appearing on the front page of the Washington Post, as well as in numerous other big city newspapers. Since then news of the prevalence study has appeared on local television newscasts, and in the Wall Street Journal. Then after five years of telephone calls and preparation, the call came: The NBC Today Show was ready to cover celiac disease! Over the next several months, we worked with the producer to arrange meeting times and to suggest individuals who could make the segment as informative as possible. The Today Show producer and crew spent a full day filming and interviewing at the CCR. Four days, and four cities (Boston, Baltimore, Alexandria, and Washington, DC) later, all taping was finished and the editing began. Two weeks later, word came that the celiac segment would air on Friday, August 15th. The producer was careful to mention that the segment would air unless there was a major news story occurring on that day. We pondered what kind of story that might be, and as luck would have it, we received a call at 4 PM on August 14: "Have you seen the news, there's a black out in New York". Jokingly, we replied: "Cant you come up with something better than that?" Quickly typing on the internet to get into CNN we found that major story, which threatened to bump celiac disease off of the show. Behind the Scenes - by Andrea Levario, American Celiac Task Force /images/case_todayshow03.jpgIt was a normal July Tuesday morning, sitting staring at a computer screen, sipping coffee—until I answered a call from Meredith Klein, a producer for NBCs Today Show. The call was a first in a series, thanks to all of the hard work by Pam King at the University of Maryland's Center for Celiac Research. Knowing Dr. Fasano would address all of the medical details, Pam sought to ensure that the issue of food labels was also covered—thus, being the co-chair of the American Celiac Task Force I was being quizzed about labeling legislation, my sons diagnosis, and what time a crew could arrive to tape on Friday. Just before lunch on August 1st, the two-man crew, and Meredith, the producer, arrived. A brief walk through of our house was done to determine where, and how to film—then action! To put my son Pablo at ease the crew let him show off his electric train set. Next, it was back to the kitchen and the gluten-free M&M cookies. Pablo measured ingredients while I read off the recipe. Once finished my husband Dimitrios, the other celiac, moved into the kitchen to whip up some gluten-free pizza. The crew was drooling, honestly. It looked nice outside, so Meredith decided to ask Dimitrios a few questions. All done, we slip the crew some cookies for the road. They spent four hours at our home, and then went for a lunch break. It was then time for us to head to co-chair Allison Herwitt's house for the next part of the taping. At 3:30 pm, the crew arrived at Allisons house in downtown Washington, D.C. and took some time to walk-through the house to determine its lighting. Tall ceilings, beautiful wall paintings, and a large antique chest mean extra setup time for the crew. "Can this door be moved, how about the chest?" The furniture is rearranged to fit the equipment. They promised to put everything back in place later. /images/case_todayshow02.jpgWe sat briefly in the kitchen while the crew taped our strategy session. Next up was Allison and her husband Jim, who staged dinner preparations. While the grill heated up, Meredith had us sit for our interview. She was off-camera without a microphone. She asked us a question, and we were to repeat it as part of the answer. It seems simple enough, until you feel that you are asking her questions to make sure the answer is what we want on TV. In contrast to Shelley Case, who was required to answer "live" on camera, we had the opportunity to say, "I need to do that one again." An hour later, the asparagus and sausages were finished cooking, and dinner was served. The addition of wine and Chebe Bread made it a perfect gluten-free meal—and day. The Seven Day Roller Coaster Ride - by Shelley Case, Dietitian and Author I was thoroughly enjoying some rest and relaxation with my husband and two daughters at our cottage at the lake after a very hectic speaking schedule, and the completion of the third edition of my book and numerous family commitments. This peace and tranquility came to an immediate halt upon receiving a call Tuesday, August 12th at 10 AM from my publisher who said that a Meredith Klein from NBC in New York was trying to reach me. I returned her call and was informed that the NBC Today Show had filmed a segment with Dr. Fasano and representatives from the Celiac Task Force. NBC decided this five minute and 45 second taped segment needed to be followed by a live interview about the gluten-free diet, and were looking for someone with media experience who could discuss the diet in three minutes or less! She said Dr. Fasanos group recommended me and could I come to New York for the interview. After a pause of shock, I said yes. Silently thinking she would say this would take place in a few weeks or months, my mouth dropped when she said it was this Friday, August 15th. I told her I would need to discuss this with my husband, Blair. He was very supportive and said that I definitely needed to go to New York, and that we would somehow work out the logistics. I called Meredith back at noon and said yes. From then on life went into "warp speed"! /images/case_todayshow04.jpgNumerous calls and emails with Meredith about the interview and travel arrangements took place, as well as an emergency call to my hair stylist (every woman knows this is critical). Also, I felt Blair should join me on this exciting venture to New York City so we called Air Canada to see if he could get a flight using his air mile points on short notice. Amazingly he could but was only able to fly with me from Regina to Toronto and would have to go to Montreal and then to New York. I was to arrive in New York via Toronto at 2:30 PM and he would arrive at 4:30 PM. We decided to stay over Friday and Saturday at our expense to enjoy the sights of New York City and fly home Sunday evening. Again, he was not able to fly with me on the same flights, but at least we would be together in New York. Wednesday was a blur. More calls with Meredith, making childcare arrangements, washing clothes, packing, a haircut and so much more to do before we left on Thursday at 7:15 AM Andrea Levario called and told me that they had waited a long time for this story and were counting on me to do a good job. "No pressure here" I exclaimed. My husband had secretly called the local media about the NBC interview. The next thing I knew I was giving a radio and newspaper interview that afternoon about the trip and celiac disease. Word also got out on the internet, and I received many calls and emails from dietitians and the celiac community throughout North America wishing me good luck. Feeling tired and somewhat overwhelmed, I called some friends from our church asking them to pray for travel safety, peace of mind and clarity of thought during the interview, and that Blair and I would somehow be able to fly together all the way to New York and back. Rising early Thursday morning, we headed to the airport and were delighted to discover they found a seat for Blair on the flight from Toronto to New York! Feeling very grateful, we were on our way to the Big Apple. Upon arrival, I received two calls on my cell phone. One from Meredith making sure I arrived safely and with instructions to head to the NBC studio for the 4:30 PM dress rehearsal, and another from CBC (Canadian Broadcasting Company) requesting a radio interview on Friday after the Today Show. /images/case_todayshow06.jpgWe arrived at our beautiful hotel on Central Park South, unpacked and were just about to leave the room when, shortly after 4:00 PM, the power went out. An announcement came on the emergency PA system that told us to remain calm and stay in our room. I told my husband that we should ignore the warning, walk down the 14 flights of stairs, and leave the hotel for NBC. Walking 10 blocks, through the packed streets of people streaming out of office and apartment buildings and traffic jams, we arrived at NBC where we met Meredith, the art directors and crewmembers. Light still came in through the windows of the studio, so we were able to organize all the foods into a display and discuss the format of the interview. Meredith told us to be back Friday morning at 8 a.m. for the 9:10 AM live interview with Katie Couric. They all thought that the power would be back on soon and told us not to worry. We headed back to the hotel, walked up the 14 flights of stairs to our room and changed into cooler clothing, as it was 95F and humid. Another miracle—our door locks had an emergency battery back up system and the card key locks worked, unlike many other hotels with only power key locks, which meant that guests in such hotels were unable to get into their rooms and had to sleep in the lobby—or in the street! As we only had a light salad lunch at noon, we went searching for food and drink, and soon discovered how big a challenge finding it would be. Other than a few bars selling their remaining cold beers, restaurants and shops were closed. We finally found a deli that was letting in a few people at a time to purchase items—cash only. Fortunately my wise husband carried cash in addition to plastic. Using flashlights and candles, we sought some safe foods—plain nuts, sunflower seeds, potato chips, dried cereal and bottled water. We crossed the street and sat on a rock in Central Park and enjoyed our "gourmet meal," and watched many bewildered people roaming the streets of New York. We tried phoning home to tell everyone we were fine but our cell phones did not work. At dusk we returned to the hotel and had to show our ID at the front door and again at the stairwell in order to get in. The hotels emergency preparation plan was in full swing and they issued each guest with a "glow stick" to get through the night. That little light was a precious gift in a very dark room with the pitch-black skyline out the window. The fear of not knowing what was going on around us, of whether or not we would soon have power, and whether I would be doing the biggest interview of my life the next morning created a lot of anxiety to say the least. My husband said we should plan for the best, set our travel alarm and go to sleep. He was soon in slumber land while I tossed and turned, mentally rehearsing the major points I needed to convey in less than three minutes! Still awake at 4:30 AM the lights and air conditioning suddenly came on. Totally exhausted from all the preparation over the last 3 days and no sleep Thursday night, I wondered how I could possibly think and speak clearly. Blair assured me that it would be fine and to get some sleep. Now was not the time to sleep! I jumped out of bed at 5:30 AM and into the shower and prepared to get myself together. /images/case_todayshow01.jpgWe walked to NBC not knowing that Meredith had left a message on my cell phone (which was not working due to the blackout) saying there was a limo at the front door waiting for us. We arrived at the stage door and no one seemed to know what was happening with the guests. After some sweet-talking, the guard let us in and we saw the indoor studio was dark—not a good sign. We went outside and there was Katie and the rest of the Today Show hosts on the air and all they were covering was the blackout. I told Blair that I was glad that they decided not to do the celiac segment this morning because all the people on the east coast would not be able to watch it. After the show was done I had the opportunity to meet Katie and give her my gift from Canada. We got a picture together and she said she really hoped NBC would reschedule the interview because Meredith had worked so long and hard to produce the story. Returning to the hotel very disappointed and not knowing whether it would be rescheduled, we again went searching for food. After wandering around for 4 hours we finally found a restaurant that was open and seemed like a safe place to eat. The owner of the family restaurant of over 50 years told us she packed her freezer with ice and sealed the door before leaving the night before. We enjoyed our first real meal in NY other than the snack foods that we ate in Central Park the night before. During the day when cell phone coverage began working again, several radio stations and Canadian TV called wanting to know what was happening in New York. I did live interviews "on the street" giving first hand reports of the events, and also some information about celiac disease. I also received an anxious voice message from Pam King wondering if I made it to New York and what happened with the celiac segment. /images/case_todayshow05.jpgLater in the day we went back to the studio and found the art director who was able to check on his computer about Mondays show. Totally amazed, we learned NBC was rescheduling the celiac segment for Monday morning with Matt Lauer (All the other guests from Friday morning including the country band Brooks and Dunn were not rebooked). I immediately called Pam King with our good news. She was elated and relieved to know the celiac story was going ahead and posted the details to the Celiac List Serve. The next call was to Cynthia Kupper from GIG who posted the info on the Dietitian List Serve. Now that we knew it was a go for Monday morning, Blair and I finally had a chance to relax. Over the next 48 hours we managed to see four Broadway shows and enjoy the sights of New York. Meredith kept in contact with us over the weekend and told us a limo would be waiting again at the hotel to take us to the studio Monday morning! Sunday night we set our travel alarm, but also placed the official hotel wake up call, now that the phone was working. I did manage to sleep a few hours but still kept rehearsing in my mind the big interview. Upon arriving at the studio we were greeted by Meredith in the green room and went over the details of the interview. Then it was off to wardrobe where they pressed my jacket, then over to make-up where they touched up my lipstick and hair. Meredith and I went into the studio and reviewed the food layout. She also reminded me that Matt might not stick to the questions in the script. I had one minute to talk to Matt before we went to the taped segment, which I listened to very carefully, as I had not seen it before. After the segment Matt transitioned into the live interview and the first question he asked was not in the script! Fortunately I was able to answer that question, and then we moved on to the other questions that were in the script. Three minutes flew by and when it was over I felt the weight of the whole world off of my shoulders. Matt, Meredith and I had a short visit outside the studio and Blair took some pictures. Check out my website at www.glutenfreediet.ca and click on "in the media" to see the New York and NBC photos. I thanked Meredith for all her hard work on producing the celiac story, and for bringing me to New York, and I presented her with a gift from Saskatchewan. Blair and I returned to the hotel in our limo and then did some quick shopping for our kids. Our last meal was at a restaurant called "Shelly's of New York," then it was back to the airport where we managed to get a flight with seats together—all the way home! As I reflect back on those seven days, it truly was an emotional and physical roller coaster ride that we will never forget. In spite of the ups and downs, we were truly blessed and we have so much to be thankful for—including the angels that watched over us! One of the primary missions of the Center for Celiac Research (CCR) at the University of Maryland is to increase the awareness of celiac disease, and we are constantly trying to do just that. We have been pitching the celiac story to all sorts of media venues for the past five years. There have been many, many phone calls—sometimes with success. For years, we wanted the big headline, but the media wasn't quite ready. This year everything changed. We had a BIG story to tell, and not even a snowstorm or blackout was going to stop us from making the headlines. The History - By Pam King, University of Maryland Center for Celiac Research -
Celiac.com 05/13/2022 - It all began when Dr. Malawer called. “Good news,” he said! “We found out what’s causing your symptoms. The tests confirmed you have celiac disease” (Gastroenterologists, he explained, rarely find definitive causes for their patients’ intestinal complaints; hence his excitement). “What this means is that you’ll have to be on a strict gluten-free diet for the rest of your life—no wheat, no rye, no barley, no oats. And no cheating—you have to stick with the diet 100 percent! But let me warn you that once get the gluten out of your system and start absorbing your food you may gain weight. I had one patient who gained 50 pounds in three months!” Dr. Malawer was elated. I was depressed. Give up bread—for the rest of my life? It seemed a sentence too cruel for someone whose favorite food, second only to fruit, was the staff of life! Tearing into a long loaf of French bread fresh from Marvelous Market and slathering it with butter was one of my favorite pastimes. I could eat the whole thing in one sitting. And what about the six-grain loaves and the Jewish ryes (with seeds, please) from Breads Unlimited where I shopped every Saturday morning? And oh my God, bagels! Big fat garlic bagels, onion bagels, cinnamon bagels, poppy seed bagels right out of the oven from Whatsa Bagel, and the flatbread bagels smothered with onions and poppy seed called bialys—never again? This was seriously depressing. Dr. Malawer had suspected celiac disease (also known as gluten intolerance) and ordered a biopsy of my small intestine and blood tests when, in taking my family history, he learned that I had a third cousin with the disease and that when I was very young I had heard my parents mention the possibility of celiac disease when discussing the cause of my many food allergies with my pediatrician. My symptoms had begun at least ten years prior to my diagnosis. I had frequent bouts of abdominal distress, gas, and diarrhea, which I could not associate with anything in my diet. I frequently talked with my internist about this, and for about a year I kept a daily journal on the state of my abdomen and what I had done or eaten, but no pattern emerged. Over that time period several sigmoidoscopies were performed and they repeatedly tested me for parasites and giardia—all test results were negative. The only thing we could figure out was lactose intolerance. When I went on a lactose-free diet or used lactose pills my distress lessened, but the diarrhea continued. My doctor finally told me that if I had another bout of diarrhea he would refer me to a gastroenterologist. That is how I became a patient of Dr. Malawer’s. While trying to absorb the news about my diagnosis of celiac disease and its implications, I asked Dr. Malawer if there were any organizations that could help me with the dietary and life style changes that I’d need to make. His receptionist directed me to the Washington Area Celiac Sprue Support Group (WACSSG), which meets bimonthly and puts out a highly informative newsletter about all aspects of the disease that includes gluten-free recipes and listings of gluten-free products available in local supermarkets or by mail. To my surprise, WACSSG’s membership of adults, children, and families of celiacs was more than 100 when I joined about 12 years ago, at a time when the disease was thought to be relatively rare. Membership has been increasing with heightened awareness of the true prevalence of the disease in the United States—about 1 in 133 Americans and 1 in 22 family members of diagnosed celiacs, according to a recent epidemiologic study. The first meeting of WACSSG I attended featured a speaker from the FDA (Food and Drug Administration) on hidden glutens found in the “fillers” of prescription and over the counter drugs. Fillers are the non-therapeutic ingredients used as binders. She urged us to contact the manufacturer of each drug we were taking to find out what substances they used as fillers. Certain fillers were not acceptable, and we needed to find out whether they came from corn, potatoes, or wheat, and of course avoid taking drugs with wheat starch fillers. What a tedious process! Not only was it almost impossible to read the fine print containing the ingredients and the manufacturer’s phone number (if listed) on a bottle of antihistamines or my prescription drugs, but when I called the manufacturers I was cycled through numerous “experts” on the abstruse matter of fillers before I got my answer. Fortunately, in most cases, the fillers were made of corn or potato starch and I was able to continue using the drug. In some cases, however, the type of starch used as filler varied from batch to batch, as the manufacturers competed on the open market for the lowest priced ingredients. If the manufacturer could not guarantee that wheat starch was never used, I could not take the drug. Aside from the obvious things I could no longer buy for myself, such as bread and wheat pasta, I had to learn, first and foremost, to read the ingredient labels on every food item I intended to eat. I was surprised to learn how many canned, bottled, and packaged food items contain wheat or oats, or barley. Wheat, in particular, seems to be ubiquitous. In a long list of ingredients, it is not atypical to find the words “wheat starch” toward the end, even in such products as soups and chicken broth, catsup, and soy sauce. Hidden glutens, I was to learn, lurked everywhere! Once I got over the shock of the diagnosis (an autoimmune disorder, which can manifest itself at any age) and stopped focusing on all those things I could no longer eat, I became aware of excellent gluten-free packaged products, cookbooks, and recipes for breads and baked goods which I could easily prepare. Among my first purchases was a “Zo” (Zojirushi) bread machine, which is particularly effective with gluten-free flours, such as white and brown rice flour, potato flour, tapioca flour, and cornstarch, to which xanthan or guar gum can be added to provide the elasticity which is lost when gluten-containing flours such as wheat cannot be used. A perennial challenge for celiacs, however, is eating in restaurants or dining with friends in their homes. I’m still shocked at the number of waiters who don’t realize that noodles, at least in this country, are typically made from wheat flour. What they lack in knowledge, however, they are usually quite willing to ask about in the kitchen. If they cannot find out whether or not a particular soup or meat dish I’m contemplating contains any gluten, I choose something else. On the other hand, some restaurants, such as Bonefish Grill (I just recently discovered), can provide a diner with a gluten-free menu; and some stores, such as Trader Joe’s, have a list of all the gluten-free products that they carry. When I eat out with friends or acquaintances, I tell them that the only kind of restaurant I really have to avoid is a pizza joint. My solution to eating in other people’s homes is to bring a dish I can eat to share with others. I tell the cook to prepare whatever they want for the guests and not to worry about me. Usually there are some things I can eat and some I can’t. To my surprise and pleasure, after I became gluten-free I was able to tolerate dairy products—including milk, yogurt, and most cheeses—quite well. Whenever people start eating something I can’t eat in my presence, they usually apologize when it dawns on them that I can’t have it. I am now able to say, “It’s OK. I remember exactly what that tastes like and I’m getting vicarious enjoyment watching you eat it.” Sometimes I’ll take a plate of frosting from a chocolate cake, or scrape out the innards of a cheesecake that is coated with graham cracker crumbs (once I’ve verified that the innards contain no gluten). But then there’s the fresh bread…that’s when I have to look away! A celiac always needs to be thinking about emergency foods, particularly sources of carbohydrates or high energy foods for travel, in case one cannot count on gluten-free products being available, such as at airports, train stations, or in foreign countries. I travel with Balance Bars (not advertised as gluten-free, but they are in fact), raw almonds, raisins, and hard-boiled eggs, or corn chips. I keep a couple of Balance Bars in my car at all times, in case I’m on the road and become hungry. One Balance Bar can usually forestall the need for a meal until I arrive home or at my destination. -
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Celiac.com 06/20/2016 - One evening in October 1999, while in my academic office at Baylor University Medical Center, Dallas, my professional and personal life changed in an instant. I had recently had the idea of testing stool for gluten sensitivity to possibly prove that patients with microscopic colitis, whom displayed an epidemiologic, pathologic, and genetic overlap with celiac disease but who rarely had positive blood tests against gluten (because they rarely had the small bowel villous atrophy of celiac disease; they had colitis which is inflammation in the colon). I had remembered that previous researchers in Scotland invasively placing tubes into certain patients without villous atrophy had been able to find antibodies to gluten deep inside the small intestine when they were absent from the blood. They called these patients latent celiacs. However, they never reported results of testing stool, which would have been a lot easier to collect because it did not require the multiple hours and patient invasion of placing tubes deep inside the intestine. That October afternoon I received the first set of results from my laboratory of a newly improved method we had developed for testing stool for the presence of antigliadin IgA, the main antibody against wheat gluten. It was about 7:00PM, it was dark outside, and late enough in the office for everyone to have gone home, allowing me a quiet setting to review these results. What I saw that night seemed like a window into the future and a medical-scientific Pandora's box, all at the same time. Not only did I see that about 75% of the microscopic colitis patients had a positive fecal antigliadin test but 25% of asymptomatic volunteers did also. I quickly did the math, and realized that celiac disease at a prevalence of even 1% would pale in comparison to these statistics, revealing that hundreds of thousands of people in the US and the world may be gluten sensitive without having celiac disease. I knew that I had just been given information that no one else in the world knew, and that it would likely have major public health implications resulting from a new dietary-induced disease paradigm. That the main staple food of Western civilization may be causing large percentages of the population to have symptoms and syndromes, not only colitis, but perhaps also irritable bowel syndrome, autoimmune syndromes, short stature in children, multiple allergies and chemical sensitivities, and even idiopathic psycho-neurologic syndromes like depression, Parkinson's Disease or Lou Gehrig's disease. Not to mention what it might mean for me as the holder of this information. Then it happened—the most significant moment of my life up to that point—it felt like someone had tapped me on my left shoulder. Though I knew I was alone in the office, I turned to the left and looked upward for some reason for what or whom might have tapped me on my shoulder. And though, while I saw no one there, I immediately knew there was a presence with me at that moment, a spiritual or angelic presence. And then I heard these words in my head "You have to leave this place". And within minutes, the decision came to me that I indeed did have to leave my academic post of 15 years to bring the results of this new fecal testing method to the public: to the 25% of otherwise asymptomatic people reacting to dietary gluten with the same immunologic reaction measured in celiac disease, antigliadin antibody, as well as to the 75% of patients with microscopic colitis and perhaps other GI ailments and syndromes who, with a gluten-free diet, might heal their chronic refractory inflammatory bowel conditions. This was a bold line of thinking for me, as I had been on a professional trajectory toward the normal milestones of a successful young academic medicine career, becoming head of a sub-specialty medical department (for me, Gastroenterology), the prospects for which had just begun to surface in my life. Yet, I had just been called it seemed, by an encounter with a supernatural force, to an assignment of sorts with a mission to fulfill. And so, the idea of creating a specialty intestinal laboratory to make this new line of testing available to those in need of its benefits was born, EnteroLab.com (entero means intestine in Greek and in medical terminology). A "dot com" I thought? Yes, this form of testing should originate "in the comfort of your own home". Why make people with GI problems fly on an airplane half way across the country merely to give stool specimens for lab analysis (the practice of my Dallas hospital for decades up until that time). If I could create a mechanism whereby only the specimens but not the person could do the flying, then we could deliver results and follow-up dietary recommendations electronically, and the healing would begin shortly thereafter with dietary elimination of the causative antigenic foods. And if the client desired, they could have a paid phone consult with me or my nurse and still not have to spend the time, money, and difficulty flying to Dallas. And I have to admit, in 2000 it was kind of exciting to be the first doctor in the world to turn his entire medical career over to the internet, as well as to have created the first clinical laboratory serving people directly without the need of a prescription or previous doctor's visit, both incredibly bold and revolutionary ideas at the time (and perhaps still). I had learned from similar major paradigm shifts in my field of gastroenterology (specifically, in 1983 when doctors in Australia found in their research that ulcers might be caused by bacteria, but whom were laughed at and ignored for about 15 years, yet later in 2005 received a Nobel prize) that it would likely take 15-20 years before anyone in the medical field would believe my new research findings relating to non-celiac gluten sensitivity and its simple diagnosis with fecal testing. This, even though I was regarded even at my young age as an expert in the field, with a significant track record for developing unique and successful ideas for diagnosis and treatment of GI diseases (see my CV at www.intestinalhealth.org/CV), and having been trained by one of the most successful and respected gastroenterologists of all time, Dr. John Fordtran. While my medical peers might not believe my results for some time, people suffering the symptoms would not care whether or not it was too soon for a scientific paradigm to shift, because they would want to try a gluten-free diet to get better. And try, they did. Following positive stool test results from EnteroLab, they got better in droves going gluten-free, and in most cases with complete healing of long-standing symptoms and syndromes. And eventually I predicted, with such remarkable improvements that had never been possible before, their health practitioners (at least the honest, inquisitive, and non-egotistical ones) would ask them what had brought on such improvement. Eventually these practitioners would begin sending other patients for the same testing that had opened the door to the dietary miracle the gluten-free diet posed for those previously tested. Beyond the consequences of having to leave my academic positions and stature behind, I had to withstand some public and more often professional criticism for undertaking a bold and somewhat maverick professional move without the permission of my peers in doing so. This does not always go over smoothly in scientific and medical professional circles. Despite having been a highly respected young published researcher at that time (40 publications by the time I was in my mid-30's), my submissions both to professional GI society meetings and GI journals (journals that I had served as a reviewer for years) were rejecting my research submissions relating to this new paradigm of non-celiac gluten sensitivity. And it seemed, the rejections were not for objective reasons, but more subjective and for principle. Other researchers in this specific field and other fields have had to endure similar treatment. Sadly, submissions to these journals addressing paradigm-shifting topics are not always reviewed in unbiased, objective ways if they deal with a subject or contain conclusions that go against what the reviewers inherently believe to be true at that time (the "I'll see it when I believe it" scenario rather than "I'll believe it when I see it"). And yet, despite submissions of excellently performed and written studies that were rejected for these reasons by a system that seemed unready for this new paradigm, the most common public and professional criticisms of my methods primarily centered around my "lack of publication". This seemed circular and nonsensical to me. After all, had Michael Dell ever published his methods of making computers delivered in a revolutionary way (mail order) to its customers? These computers worked and served its customers well without a published method? Why is lack of publication of a medical technologic method equated with lack of Truth or efficacy? My response was and still is to remain true to my own data and experience, and my desire to serve and help people, and to not proceed according to the needs and critical dictates of others having no experience with my techniques. And so, 15 years later, as EnteroLab approaches our millionth patient tested, and with the current number of referring health practitioners in excess of 1,500, EnteroLab.com stands as a successful purveyor of medical Truth and public service. I ask people "How could hundreds of thousands of people be satisfactorily served over 15 years if what we are doing was not worthy and True?"; at some point, a person's or business' track record has got to stand for something positive and meaningful. And it seems my estimate of the time it would take for other researchers or mainstream practitioners to begin getting on board with the new paradigm was correct. Non-celiac gluten sensitivity has recently been further researched and substantiated to exist, just as I reported in public and professional lectures as early as 1999 (but published by others as early as 1980). And it has only been in the last 2 years or so that I have seen the question being raised at national and international GI meetings by "celiac researchers", but at least they are now doing so. Yet, the public has been the patron of the paradigm all along. In the last 4-5 years gluten-free food companies have carried the ball farther down the field than ever before. Yet interestingly, this focus on the food has mistakenly led people to regard this serious clinical syndrome as "a diet" not a disorder. And as we all know, "diets" come and go for people, even week to week. This is not healthful for any diet, but especially not for a gluten-free diet where the immune system can be hyperstimulated by repeatedly withdrawing and reintroducing such an immunogenic food. And yet, whether or not people choose to test for the syndrome with our stool test (the only test available to sensitively detect non-celiac gluten sensitivity), if they decide to go gluten-free, that must be a lifelong dietary decision. Otherwise, the test should be employed to help determine how serious the circumstances might be, and to further reinforce the clinical need of its permanency. Because after all, 25% of people, even when asymptomatic, have detectable immune reactions to gluten, and in many of these, damage to the intestine can be detected as well (measurable by EnteroLab from a fecal fat test from the same stool specimen). We have stood firm on the Truth of our research and clinical results, patiently waiting these 15 years for the public and professional paradigm-thinking to catch up. And catch up it has. Everyone today has at least heard about gluten, and people are not called crazy because going gluten-free makes them better physically, mentally and/or emotionally. But our work is not done. There are many millions more children and adults suffering not only from gluten sensitivity, but from other food sensitivities as well, and other diet-related maladies (obesity, endocrine problems including diabetes, eating disorders, food addictions, etc.). I am appreciative of the support and respect given to me and EnteroLab by Celiac.com and its founder, Scott Adams, who also knew early on there was something real about gluten sensitivity. His 14 year old "Journal of Gluten Sensitivity" is evidence of that. And so now, we are proud to partner with Celiac.com by allowing them to be the first company outside our own to offer our proprietary EnteroLab tests for sale, having created some special gluten-oriented testing panels for them. And as we go into the next decades of service, I leave you with a hint of the next, new paradigm… which is really the old paradigm. Gluten sensitivity is not limited to wheat, barley, and rye, but often includes oats as well (not just because of wheat contamination of the oats). This was the clinical standard from its beginning by the founder of the gluten-free diet, Dr. Willem Dicke, but that got changed in the last 10-15 years by substandard research methods based only on celiac disease as the end point and bias toward wanting to find such a result (all studies contain bias by the researchers, it's the nature of the mind influencing reality). So for the first time anywhere, we are using a diagnostic test for non-celiac oat sensitivity, and showing that about 50% of people reacting to wheat, barley, and rye, also react to oats with a similar immunologic reaction detectable in stool. But more on this as the information and paradigm-acceptance develops. Hopefully, this one won't take another 15 years to be accepted. We at EnteroLab and my non-profit public educational institute, The Intestinal Health Institute (www.IntestinalHealth.org), have been greatly honored to serve all our patrons to date, and we look forward to meeting and serving more of you in the future. For more information on testing at EnteroLab.com, please call 972-686-6869 or go to www.EnteroLab.com. Thank you for reading this historic account. -
Hello, and thank you for your interest. I've never seemed to really have the time for forums, but I'm giving it a try for two reasons: first, perhaps someday it will inform someone asymptomatic considering going gluten-free that, maybe, there could be risks, and second, because I have no idea what's going on anymore, haven't found any similar cases online, and am hoping for some advice from people with greater experience. The following is a product of my memory and a number of notes I took regarding my symptoms once things started getting bad. Henceforth, I shall reserve the term ‘pain’ to refer to ‘sharp pain’, which I define as discomfort that appears to affect my breathing (i.e. gasping, holding, unsteady, etc.). I shall use the term ‘ache’ to refer to ‘dull pain’, which I define as discomfort that does not encourage any changes to my breathing (excluding the expression of discomfort, i.e., moans, cries, expletives, etc.). I will put numbers [#] or intervals [#-#’] following a symptom to provide a measure for the intensity of discomfort out of 10 caused by the symptom. I apologize in advance for the length; it is a long story, so hearken here and gather 'round all ye ready for a tale… ------------------------------------------------------- First, some basic personal info: I'm a 29-year-old, ~165 lbs. male in grad school with no marks of malnutrition I know of (strong teeth, healthy weight, intelligent, etc.), and (before all this started at least) no known allergies or autoimmune problems of any kind (though my father has psoriasis). I have never shown signs of hypochondria, and, if I’m honest, have usually required prodding to consider going to the emergency room (ER) or doctor. Recently, I have started to suspect in hindsight that I may have had some mild, lifelong constipation. Finally, I was diagnosed with obsessive compulsive disorder (OCD) when I was 12 and have taken fluoxetine (SSRI, anti-depressant) since, though have still dealt with compulsions daily. It is a constant struggle, for which I’ve done behavioral therapy, and engage in at least 30 minutes of mindfulness meditation daily as well. While attending college I was diagnosed with adult ADHD and prescribed Vyvanse, which I’ve taken daily for ~8 years now. Roughly 4 years ago (Summer 2015) a relative of mine was diagnosed with Celiac Disease (celiac disease). While I had no symptoms (asymptomatic), I got a blood test and was found to be borderline, so my doctor suggested that I start a gluten-free (gluten-free) diet. While not terribly pleased by losing glutenous foods, the neurological connections to celiac disease made me think my OCD might improve. After all, even if it didn’t seem to help, everything I read seemed to suggest I could always just go back to eating gluten again. Thus, in January 2016 I switched to a diet of mostly potato patties, fruit, and celery in the morning and a mix of rice, beans, broccoli, cheese, and a little chopped meat for lunch and dinner. I initially lost a little weight (5-10 lbs), but returned to my normal weight within a few months once I got the hang of it. I was a little depressed at first by the loss of glutenous food, but tried to remain positive. However, after a while gluten-free, I noticed a very mild but slowly worsening gut ache [1-3]. Further, while I had been drinking milk religiously my entire life, I found it now made my stomach ache [2-3] after going gluten-free (it is noteworthy that I did not appear to have a similar issue with cheese, suggesting Casein's the problem?). Being extremely stubborn and feeling gluten had already restricted my diet enough, I refused to give up milk for another 3 months, but finally gave in as the discomfort worsened [3-4]. I also began noticing the development of other disconcerting issues, including mild fatigue [2] and a painful red rash [4] on my neck that appeared when stressed (mostly in cases of lack of sleep). Worried by these developments, I looked up more info online and found out how I really should have gotten an endoscopy+biopsy before going gluten-free. I asked my doctor, got directed to a gastrointestinal (GI) specialist, scheduled an endoscopy for ~3 months down the road (March 2017), and started eating gluten again. This is where things start getting weird: I found that upon eating gluten again, the gut ache vanished, and I could drink milk again. I had already gotten hints of this impression from a couple instances of likely gluten contamination, but this seemed to confirm it. While the endoscopy report suggested nothing looked amiss visually, the biopsy showed some villus atrophy suggestive of (among admittedly a few other things) celiac disease, and my GI doctor made the diagnosis of celiac disease (Summer 2017). Still concerned with the constant, worsening gut ache and the discomfort from drinking milk (both of which returned upon resuming a gluten-free diet), I continued to see the GI specialist, who scheduled a Lactose breath test. This came back negative. By the time I saw my GI specialist again it had been another 6 months gluten-free (scheduling both appointments and testing involve ~2.5-3 month wait times), and by then the ache had returned and worsened [3-6]. He recommended a hydrogen breath test, but due to an internal error, this didn't get scheduled correctly. I did not make too much of a fuss, since, if I'm completely honest, I had not been much impressed by the usefulness of the Lactose test, and all these tests were getting expensive for a grad student. Moreover, by the time I found out, the ache had grown severe enough that I had started intentionally eating gluten periodically, as it appeared to sort of 'reset' the growing gut ache, and was finding it a workable, if temporary, solution (~March to June 2018). In general, I also remember (throughout but especially around this time) not being able to shake the feeling that I was somehow hurting myself with the gluten-free diet, but suspicious of my desire for glutenous food and with the same encouragement from others, I ignored the feeling. Now, starting in May 2018 I had also started taking an herbal supplement encouraging good circulation for an unrelated, lifelong health issue. While this originally seemed fine, beginning around July 4th I started to feel dizzy [2], sweaty [1], and having pain in my chest (heart) [0-5], lower-left abdomen [0-5], upper-left abdomen [0-2], and a vertical pressure [2-5] slighly left of the middle of my abdomen (right where my aorta should be). This came to a head July 7th, when one night it got so bad [7-8] that I couldn't sleep, kept hyperventilating (which I repeatedly calmed using breathing techniques learned in behavioral therapy), and felt 2 'tearing' pains [4] in quick succession in my chest (just left of sternum, near 4th rib) followed by an immediate decrease of the (aorta?) pressure I’d been feeling. Finally realizing the supplement might be behind it, I stopped taking it the next day. Most of the symptoms subsequently went away, save for an ache in my chest [2-4], pain in my lower-left abdomen [2-3], pain in my upper-left abdomen [0-2], a lump in my lower throat [2-3], and a general ‘hollow’ feeling in my left side, all of which have remained (with varying intensity) up to the present. Since my grandfather had total heart failure at 36 and, after several instances, later died due to a genetic predisposition for a prolapsed mitral valve, I was concerned when the chest (heart) discomfort failed to go away after several days. Convinced by my friends that I probably should have gone to the ER that night, I went and got a chest x-ray, abdominal aorta ultrasound, and electro-cardiogram, none of which showed signs of trouble (July 2018). Later (January 2019), while trying to get to the bottom of all the pain I was in, I would also see a cardiologist who did an exercise stress test, a 24-hour holter monitor test, and an echo-cardiogram, none of which suggested anything untoward, and leads me to suspect my heart itself is okay despite the chronic discomfort. Now, back to the matter at hand: after that night of cardiac distress, the next time I tried to eat gluten I had severe nausea [6-7] and vomited. A month later (August 2018) I tried to eat gluten again, and had terrible pain in my upper-left abdomen [7-8] and an intense, painful, bloating sensation just below where my ribcage meets [6]. I later did some research online and found discussions of celiac disease being 'activated' by a stressful physical event, and suspected this might explain my sudden development of symptoms. That said, I found nothing regarding cases of asymptomatic celiac disease becoming symptomatic, and nothing about going gluten-free causing bacterial overgrowth (which was my leading theory on the growing gut ache), though I did find it commonly develops in patients with celiac disease. In any case, deprived of gluten, I lost the defense I'd been using against the growing gut ache. Eventually the ache became debilitating [5-6], and was accompanied by significant gas (~30-40 instances of flatus daily), increased burping, discomfort for around ~2 hours after eating [2-6], worsening of the lump in my throat [0-5], increased bowel movement urgency, occasional mucus in stool, irregularity in bowel movements, and intense fatigue [4-6]. Fortunately, this peak in symptoms occurred right around my next GI appointment (October 2018), where, considering the apparent severity and symptoms, the doctor decided to prescribe antibiotics for Small Intestinal Bacterial Overgrowth (SIBO) despite not having results from a breath test. Shortly after taking the antibiotic, I began to feel much, much better; the growing gut ache and gas largely disappeared, though notably the off-and-on pain in my lower- and upper-left abdomen and the ache in my chest (heart) remained. The lump in my lower throat also returned off and on [0-2], as did the gut ache gradually over time, which now generally included a sore tenderness throughout my belly [1-2]. Free of the crippling gut ache, I turned my efforts to sorting out the remaining fatigue and discomfort. I got a thyroid panel (November 2018), where I had mildly high levels of TSH (~6.4 to 7.4) in 2 consecutive thyroid blood tests six weeks apart (which could explain the lump in my throat), though thyroid antibodies returned negative and T3 & T4 levels remained normal. Hoping to avoid a recurrence of SIBO, I also tried several shifts towards a low FODMAP diet consisting mostly of salad, sweet potatoes, plain white chicken, fish, and a big mug of bone broth (with quality gelatin added in for good measure) every day (by this time, I had switched to 2 meals a day to minimize time spent incapacitated after eating). Nevertheless, by February 2019 the SIBO was back [5-6], and I had to request another round of antibiotics, which left my gut feeling even sorer than the last time. The continuing fatigue [4] left me tired all the time, and the lump in my throat began to be accompanied by an occasional ache extending down into my upper torso slightly [4]. Over a month after stopping the 2nd round of antibiotics (April 2019) I was finally able to get the Hydrogen breath test, and while I felt a rise in discomfort after drinking the glucose [from 2 up to 5], the test came back negative. However, my GI doctor suggested the tests aren't all that reliable and the effectiveness of the antibiotics is strong evidence. In this time (around January 2019 and on), I should also mention the chest (heart) ache had begun to mildly spread into my left shoulder [1-2], arm [0-1], and leg [1-2], as well as up the left side of my neck and head [0-1] (though to be clear, these are more worrying than intense, and other than my neck and head they seem closer to muscular aches). Perhaps related to the former, during a visit home my family pointed out that the way I walk has changed: my left heel turns inward, enough that it has warped the shape of my shoes over time. Over the winter (Jan.-April 2019), I also noticed my left leg seemed to get colder faster than my right, and whenever I exercise the muscles of both my left leg and left arm appear to tire faster. I occasionally have mild headaches [1-3] in the left side of my head, which while I found initially disconcerting, is evidently not terribly uncommon in people. Meanwhile, having been monitoring my TSH (which was up to ~9.4 by March 2019, but still negative on thyroid anti-bodies), I was prescribed a low-dose (25 mcg) of Levo-Thyroxine for the Hypothyroidism I was mysteriously developing. Unfortunately, I found the new medicine not only made my stomach hurt [3-4], but also didn't much alleviate the fatigue or lump in my throat, and appeared to make the chest (heart) discomfort worse [3-5]. Fearing Hashimoto's or other autoimmune disease commonly paired with celiac disease, I got a thyroid ultrasound (March 2018), but it returned unremarkable. My next doctor visit 6 weeks later showed a TSH of 8.9, so my doctor increased the Levo-Thyroxine dosage (50 mcg), though could offer no comment regarding the chest (heart) discomfort it seemed to exacerbate. Before I started taking the increased dosage however, my GI doctor suggested I hold off on taking anymore Levo-Thyroxine to see where I stand in TSH without the medicine, which I've done for ~6 weeks now and will be getting checked again soon. That largely brings us to the present, save for one last development. A few weeks ago (May 2019), I caught a stomach bug from my roommate. While mildly unpleasant for him, it was the first time I'd gotten sick with anything significant since this all started, and it felt more intense than any sickness I can recall [8-9]. Enough so that when I felt the rise in nausea that usually precedes vomiting, it was so intense I briefly blacked out and fell into the wall (something I've never experienced before). After coming to, I suddenly became drenched in sweat over a dozen seconds or so, despite lacking any noticeable fever and sitting still. Having trouble thinking clearly and worried by the fainting, I entrusted myself to my roommate, who took me to the ER where they explained I had an incidence of 'Vagus syncope' due to my Vagus nerve being overstimulated. My particularly intense reaction to what seemed a common 24-hour stomach bug has lead me to wonder if perhaps the nerves of my gut may just have somehow become hyper-sensitive causing constant “functional pain”, which could explain why so many tests have returned negative. Then again, it could also just be the bug was particularly hard on my gut because it is already inflamed. Naturally, neither can be considered more than just speculation on my part, but I wish to make it clear this instance of sickness was very far from ordinary as far as my life experience is concerned. That largely does it as far as history goes. My diet has relaxed to a fusion between my former gluten-free rice-based diet and the low-FODMAP (also gluten-free) diet. I regularly take Berberine, which has appeared to help keep the SIBO from recurring for at least the last 4 months. I still experience mild to severe gut discomfort after eating for around 2 hours [2-6], and thus stick to 2 meals a day. ‘Small’ (a relative term) quantities of gluten (1 cheez-it/day over 1 week in May 2019) no longer appear to cause a noticeable reaction, though I have not repeated this or any other tests involving gluten over the last several months in fear of aggravating my gut. Moreover, with the constant (but inconsistent) gut symptoms I have, I’m not sure I can confidently identify a reaction anyways. I still have trouble with milk [0-4], but try to eat at least some dairy regularly to avoid losing the ability to. The most consistent source of discomfort in the last few months is in my lower-left abdomen [2-6], followed by the upper-left abdomen [0-6] and chest (heart) [1-6], the 3 of which appear to be connected somehow. When particularly intense [>4], these sources of discomfort will also extend into my back, and in the case of the chest (heart) ache I can sort of feel where the two tearing sensations occured. On rare occasion the upper-left pain will be mirrored to my right side, though with lower intensity [0-4]. My left leg and arm still tire faster and still constantly ache a little [0-2], but beyond being disconcerting this usually remains only a very minor annoyance. I'm still terribly tired [3-6], and the lump in my throat comes and goes [0-4]. Mornings continue to be when symptoms tend to be at their worst. ----------------------------------------------------- That should do it; if you’re still reading this, I both respect and appreciate your determination and perseverance. If I didn’t sound all that worried throughout all this, know that it is entirely an affectation; I’m pretty much terrified at this point. I’m always tired, I’m losing my handle on my OCD, my daily meditations are in shambles, and I am constantly falling behind with my work with all the time lost incapacitated after eating (enough now that I suspect I’ll need to put off graduating). Even more though, the gradual changes in my personal behavior and outlook on life deeply frighten me. Obviously, it makes no sense (scientifically, as far as I understand it) that my problem was/is being gluten-free, and indeed, I could easily believe I shouldn’t eat gluten despite its former effectiveness at easing the growing gut ache. More, I suspect my original change in diet somehow messed up my gut biome, and my ‘glutenings’ were re-establishing whatever was going on before. My positive response to antibiotics seems to demand my problem at least involves something to do with gut flora. The hypothyroidism remains a complete mystery to me, seeing as the antibodies are negative. The hollow feeling and localized pains in my left side make me think part of the problem likely involves certain organs, though how they could have been damaged after that night of apparent cardiac distress remains unknown to me. Having done more research I’m really thinking the lower left pain has to do with my sigmoid colon (I can kind of feel it when I flex for a bowel movement). My best guess would be some sort of diverticular disease, as it fits best with my other symptoms (mucus in stool, recurring SIBO, discomfort after eating, etc.). Since it hasn’t gotten better after nearly a year I think a CT scan would be justified, but my doctors seem resistant. 29 is pretty young for diverticula, but my thought is that the mild chronic constipation I’ve always had might have hastened the process. It would also be nice to just have a picture at this point to rule out things like mesenteric ischemia. I don’t mean to complain as I clearly don’t have it as bad as some stories I’ve read, but I’m getting a little desperate for help and don’t seem to be getting anywhere with what I’ve tried so far. I’ve scheduled an appointment with a new doctor, though my current doctors are taking a lot of time to share my records. I’ve also scheduled some counseling in hopes of helping to rule out psychosomatic effects and better monitor my psyche (I’ve never really had much success with counseling in the past but I’m willing to try again at this point). Regardless, please let me know if you have any suggestions, ideas, references to similar cases you’ve heard, or anything else you think might be useful; I’d truly appreciate it. -
Our story began when our first child, a perfect baby boy, began to get sick. It started benignly enough, with more than just a touch of diarrhea, which the doctors attributed to the antibiotics he was taking for ear infections. When time was up on our allotted four-minute visit, we were told to keep an eye on it and call them if it didnt go away in a couple of weeks. What we were supposed to keep an eye on, Im not sure. The piles of diapers that we had to haul out every afternoon? The lovely rhinoceros-skin texture that my hands were assuming, thanks to the extra washings? Or maybe the water bill that had skyrocketed because of the additional laundry I was doing when the Pampers just couldnt accommodate the excess loads they were being asked to hold. In any case, they had told us to call if the diarrhea didnt go away in a couple of weeks, so we did. Apparently, what they meant to say was, well tell you to call if it doesnt go away just go get you out of our office feeling like we did something, but really wed rather you dont bother us because all were going to do is give you another obligatory four minutes listening to you whine and then tell you is that theres nothing wrong. Why cant people just say what they mean? Instead, I endured the heavy sighs of the receptionist who took it upon herself to play doctor and say, You mean youre bringing him in again just because of diarrhea? Well, yeah. Thats what I was told to do! Several heavy sighs and even an I-hate-neurotic-new-moms-snicker later, we had an appointment - for three weeks out. The second visit was, as I eluded to, an obligatory waste of time. After looking in Tyers ears, nose, and throat (did I lead you, Doctor, to believe that this problem was above his waist?!?), the doctor concluded that there was nothing to be concerned about. Oh, really? I guess its normal to be changing 22 diarrhea diapers a day? I dont think the doctor was amused when I offered to present him with a stool sample, since I was sure in the next ten minutes we would have one that we could examine together. No, I was sent away and told, once again, to call if the situation didnt improve in the next two weeks. Yeah, sure. Ill be sure to do that. It was with sadness and grief that I realized this pediatrician whom I had hand-selected after interviewing no less than 12 in the area, and who had offered a congratulatory hugs less than 12 minutes after Tyler was born, was not listening to me. It was time to find doctor-number-two. Sadly, our experience with doctor-number-two was a repeat of that with number-one. A quick looks in the ears, nose, and throat, followed by a declaration that we had a healthy baby boy sent my blood pressure skyrocketing. But what about the diarrhea I mentioned? I managed to ask with control worthy of the Nobel Peace Prize. Really, diarrhea is nothing to worry about unless the child is severely dehydrated and losing weight, I was told, as though I had the I.Q. of a water bottle. Well, Ive been force-feeding water to avoid dehydration, I explained, thinking that might make him realize that there was a reason Tyler wasnt shriveling up from thirst. Oh, good, he replied as he raced out the door to his next four-minute appointment. Keep it up and call me in two weeks if the situation hasnt improved. Ugh. After a few months, several hundred dollars worth of diapers, and cracked and bleeding hands, we switched to doctor-number-three. We chose a woman this time, figuring maybe some element of womans instinct or a maternal inkling would alert her to what we believed was a worsening condition. Well, hes in the 75th percentile for height and weight, she declared after looking in his ears, nose and throat. Certainly nothing to worry about with this bruiser, she gloated. Trying to be patient, hiding the clenched fists, and managing a smile that was as sincere as that of a politician running for office, I replied, But he used to be in the 98th percentile. Wouldnt that indicate weight loss, which could be a sign of something wrong? Oh, honey, dont be ridiculous! What do you want, a prize fighter? Hardy, har-har. I had a real Carol Burnett on my hands. Again, we were sent away and - you know the rest. And so it was. There was nothing wrong. Never mind that he had been loading up 22 diarrhea diapers a day for the last nine months - apparently he was just a poop machine. Never mind that his belly had grown distended to the point that he couldnt bend over and pick up his toys. Never mind that his arms and legs were skinny - hey, he was still in the 70th percentile for height and weight, and its not like I was trying to raise a prize fighter or anything. So it was without a care nor a complaint that I dragged my irritable, listless little Biafra baby into the office of doctor-number-four, a doctor to whom we were assigned when we changed insurance plans. After looking in Tylers ears, nose and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see if its ripe. My goodness, he said with that Im-alarmed-but-Im-a-doctor-and-dont-want-to-freak-you-out-so-Ill-smile-smugly-and-act-calm voice, Whats going on with his belly? I couldnt answer through the tears of relief. Relief turns to terror I never thought Id be so excited to be referred to Childrens Hospital. I called my husband with the good news. Sweetie, guess what?!? We have to go to the hospital! I announced as though we had just won the lottery. Never quite sure how to respond to my usually-overly-enthusiastic-and-not-always-sensical proclamations, he replied, as usual, with caution. Really? Is that a good thing? I guess in retrospect it wasnt a dumb question, but at the time it deserved, DUH! Were going to see the gastroenterologist! On the drive to the hospital, we sung the I love you song with such glee that it made Barney look like a candidate for Prozac. Were going to the hospital to see the nice doctor whos going to help us make you feel better, I sang to the tune of whatever I could come up with on short notice. Tyler, 18 months old then, sang too, and we practically danced into the doctors office for our first visit with the gastroenterologist. Somehow a three-hour wait in a doctors waiting room does a lot to dampen enthusiasm. Our gastroenterologist didnt even look in Tylers ears, nose or throat, a small favor for which I could have kissed him, even as tired and hungry as I was. He did do the honeydew thump on Tylers belly, and asked how long he had been experiencing diarrhea. Oh, about nine months now, I commented. Nine months? he asked. The large eyes and knitted eyebrows spoke for him, so he didnt have to finish his thought, which was obviously, Why did you wait so long, you oblivious, inexperienced nitwit? We were told that a variety of tests needed to be run. He tossed around names of these tests: upper G.I., lower G.I., ultrasound, serology, endoscopy, biopsy fecal fat, enzyme panel, WBC, and sweat test. Thinking maybe I had slept in those days during my Bio 101 classes in college and not wanting to admit it, I said, Oh, right. So that means youre testing for.... as though the condition was right on the tip of my tongue and I just couldnt recall it. He saved me the awkward silence that would have ensued and filled in the blanks. Were going to be looking at a number of possibilities: blood diseases, cancer, cystic fibrosis...that sort of thing. I thought I was going to faint. The bittersweet diagnosis After signing reams of release forms that we never read, and allowing doctors to poke, prod, anesthetize and scope our baby, we finally got a call from the doctors office asking us to come in for a consultation with the gastroenterologist. Well, cant you just tell me what it is on the phone? I asked. No, he wants you to come in, the receptionist told me. But is that a bad thing? Wouldnt he just call to tell me nothings wrong if my baby was okay? I began to panic. After a three-day wait in the waiting room (okay, it just seemed like three days because hours spent waiting in a 4 X 4 cubicle with an 18-month-old are automatically quadrupled in value), we finally saw the doctor and heard the words that would change our lives forever. Your son has celiac disease. Huh? Is that anything like a flu bug? Surely there was a pill we could give him that would make it all better. It simply requires a dietary change... Okay, so maybe we overdo the goldfish-shaped crackers a little - we can do without for a few weeks. ...he wont be able to eat gluten for the rest of his life. Back up the truck here, Mister. Rest of his life? Gluten? Is that anything like glucose? Because we can surely cut down on sugar.... In a state of shock, we were directed down the hall to the hospital dietitian. Without looking up, she put her hand out, presumably wanting the chart that we had been instructed to give to her. Still in a daze, we handed her the chart. Several seconds of silence passed - had she fallen asleep? Was she writing her grocery list? Had she forgotten we were there? Finally, she said, So you need information on the gluten-free diet, huh? Dont get many of those. Really? I asked. How many have you had? None. She handed us a crumpled blue piece of paper that had writing on both sides. The first side, filled with size-two font, listed the foods and ingredients we were to avoid. The other side had size 48 font, presumably in an effort to make the page look full, and was titled, Acceptable foods on the gluten-free diet. There were six items on the list. Our first shopping trip Still resembling a zombie, I realized I had an 18-month-old child to consider, and he had been through as much as we had, so I asked what he wanted to do. Get a tweat! Cwackews! he replied (translated to treat and crackers for those of you whose kids are over 12). Not a bad thought. We had to learn how to shop sometime, so off we went on our first gluten-free shopping expedition. Armed with our crumpled blue sheet, we started in the cracker aisle. Carefully reading labels, I was amazed and delighted to find that not a single package had gluten in the ingredients list! How easy was this going to be! Lest you think that I do have the I.Q. of a water bottle, you have to remember that I was till in a state of shock, topped off with a touch of denial. I consulted my trusty blue sheet and realized that flour was, indeed, buried in the size-two-font list of forbidden ingredients, and put back all the crackers I had tossed into the cart. We went up another aisle. Pretzels...nope. Bread...not even close. But Mommy, I just want a tweat. Tylers patience was wearing thin. In desperation, I picked up a bag of Fritos. Could it be? Really? Surely I missed something. No, it was true. Not a single gluten molecule to be found! Hallelujah. I grabbed seven bags and headed for home. Ten years later... The beauty of living with the gluten-free diet is that you learn to love the gluten-free diet. Not only is it a medical necessity in our family, but it is a healthy way of life. Sometimes when I think, If only I could not have to worry about making tonights meal gluten-free, Id make..... WHAT? What WOULD I make? Would I make macaroni and cheese out of a box? Ick! Would I make spaghetti? So what! The gluten-free stuff is just as good these days. Would I make a quick trip to Kentucky Fried Chicken or a pizza place? Oh, now theres a healthy meal. We put so much emphasis on making healthy meals that we wouldnt do those things anyway (well okay, every now and then maybe!). We are so fortunate to live in a time when celiac awareness is at an all-time high. Gluten-free foods are delicious and readily available. Customer service reps actually know what were talking about when we ask if their products are gluten-free. Cookbooks and resource books abound, as do support groups and seminars. Most of all, those who are diagnosed are the lucky ones. No longer do they have to wonder why theyre fatigued, depressed or suffering gastrointestinal distress; they can rest assured knowing their gluten-free diet is preventing them from being more susceptible to conditions such as intestinal lymphoma, infertility, and osteoporosis. Yes, this diet can be a pain, but follow the mantra and you will be liberated. No longer will the diet control you, but you will control your diet. So....all together now ... Deal with it; dont dwell on it!
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