Voice of Experience
Medically Speaking May 2006 WHAT IS CELIAC DISEASE? by: DOUGLAS D. DYKMAN, MD, FACG, FACP ANNE ARUNDEL GASTROENTEROLOGY ASSOCIATES Celiac disease, also known as Sprue, or Gluten Sensitive Enteropathy, is a disease that affects the small intestines decreasing its ability to absorb nutrients. Villi, small finger-like protrusions within the small intestines, absorb nutrients from food and pass it into the bloodstream. In Celiac disease, the villi become damaged and can no longer absorb nutrients properly, leading to malnutrition. The damage to the villi is caused whenever gluten, a type of protein, is consumed. The cause of the gluten sensitivity is unknown. Recent studies suggest that Celiac disease, a hereditary disease, is linked with genes on Chromosome 6 involved in the regulation of the body's response to the gluten protein. When a person with Celiac disease consumes gluten, their immune system detects the gluten as a foreign substance and attacks the villi, preventing proper absorption of nutrients; resulting in damage to the villi and malnutrition. Celiac disease is a genetic autoimmune food allergy with symptoms easily mistaken for Irritable Bowel Syndrome, Crohns, and chronic fatigue. Reactions to gluten vary from person to person. The most common symptom in children is irritability. Although uncommon, some people have no symptoms at all, or just subtle nutritional deficiencies or anemia. This can make diagnosis difficult. When a patient presents with symptoms that may suggest Celiac disease, blood tests or small intestinal biopsies are necessary. Most patients with Celiac disease have increased levels of certain antibodies. A small intestinal biopsy is necessary to confirm the diagnosis. To obtain this biopsy, a small thin tube, called an endoscope, will be inserted into the mouth and sent down to the small intestines for a tissue sample. Most patients prefer to be sedated for this procedure. Celiac disease is treatable. A lifetime gluten free diet is the only treatment. Villi will self repair and, in most people, within a few months be completely healed and once again functioning properly. Without the consumption of gluten, the immune system stops attacking the villi and the nutrients can be properly absorbed. Read labels carefully. As of January 1, 2006 the FDA required food labels to clearly state if food products contain protein derived from milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat, or soybeans. However, rye, barley, and other grains also contain gluten, and may not be listed. ARE OATS HARMLESS IN CELIAC DISEASE? Published on-line, Summer 2005 at www.celiac.com By Dr. Thomas O'Bryan, DC, CCN, DABCN Less than a decade ago in Chicago, there was a time when thousands of residents would have claimed that the best basketball team of all time was right here, right now. In the 1990's, the combined magic of Michael Jordan, Scottie Pippen and the rest of that stellar Bulls team was, to a basketball fan, like nothing ever experienced in the past. But then, there are those who would argue that a different team of the past (perhaps Larry Bird and the Boston Celtics, or Magic Johnson & Kareem Abdul Jabar of the Los Angeles Lakers) was the best ever. And, there are statistics, personal experience and memories of games played to validate each position; everyone was right within their own world of experience. For an individual with Celiac disease (often referred to as "an allergy to wheat and gluten products"), there are several factors to consider in determining if oats is a safe food. Questions commonly asked by patients with known wheat or gluten sensitivity include: Oats are not a wheat product. Are oats safe for me to eat? Can oats have gluten? My Doctor says that oats are Ok, but I've read conflicting reports that say oats are to be avoided. Which is true? As with the greatest basketball team of all time (the Chicago Bulls), the answer depends on your point of view. You can easily find doctors and researchers who will offer evidence on both sides of these questions. Here's the latest information to help you in answering these questions for yourself. There are three factors to be addressed: 1) Is there gluten in oats? 2) Can oats trigger a gluten-type sensitivity reaction? 3) Is there anything else in oats that can be offensive? Let's consider these factors one at a time. First, is there gluten in oats? The clear and uncontested answer is no, there is no gluten in oats. And, yes, there is gluten in oats. Confused? Here’s why: gluten is an offensive prolamin (simple protein found in seeds) protein found in wheat. It is known to be one of the triggers to the symptoms of Celiac Disease. Avenin is the prolamin protein of oats. It has a different chemical structure than gluten and 'avenins have been predicted to contain only a few glutamines that can be deaminated by tissue transglutaminase, presumably making avenins less immunogenic', thus substantially less offensive to the lining of the intestines than gluten [15,16]. The offensive protein in oats is not gluten. So, no, there is no gluten in oats. And now to the yes answer regarding the gluten content of oats. In a recent study entitled 'Gluten Contamination of Commercial Oat Products in the United States' 14, the author purchased 12 containers of rolled or steel-cut oats representing four different lots of each of three (3) different brands between October 2003 and March 2004 [14]. The three brands were Quaker (processed in Chicago---selected because it is a popular brand of oatmeal in the U.S.), Country Choice (Eden Prairie, Minnesota---because it is certified to be organic) and McCann's (Odlum Group, Nass, Ireland--- because it is processed in an oats-only facility). Following the Codex limit for naturally occurring gluten-free foods, oat samples were considered gluten-free if they contained 20 parts per million (20 ppm) or less of gluten [17]. The results were startling. All three brands of oats had gluten contamination above 20 ppm in at least two of the four samples tested. Ranges of gluten in the 4 samples from the 3 different companies ranged from: McCann's, none to 725 ppm Country Choice, none to 210 ppm, and Quaker, 338 to 1807 ppm. Even the best of the three (Country Choice) was 10 times above the safe limit of gluten contamination, and the worst was 90 times above the limit. So, even though oats are not composed of gluten, it appears that oats contain gluten more than half the time. And the amount of gluten present is often dangerously high for someone with Celiac Disease. So, you are asking: Where does the gluten in oats come from? The author of the study wrote: Celiac organizations across the United States continue to advise against the consumption of oats because of concerns that commercial oat products may be contaminated with wheat, barley, or rye during harvesting, transporting, milling and processing. [18] Can oats trigger a gluten-type sensitivity reaction? Once again, there are two answers. On one hand, if oats are contaminated with gluten at dangerously high levels more than half the time, the answer would have to be 'yes', oats can trigger a gluten-type sensitivity reaction. So, if you are following a strict gluten-free diet, doing very well at food selections, AND eating oats (''because there is no gluten in oats''), you could still have complications of Celiac Disease. We know that Celiac Disease is a chronic inflammatory immune response in the intestines and other tissues due to gluten exposure[1]. Is it safe to eat oats on a gluten-free diet? Given the above information, it is likely not safe for celiac patients to eat oats or oat products. Can oats trigger a gluten-type sensitivity reaction? This second question has to do with the composition of oats. Due to the protein in oats (avenin) having such a different chemical structure, it has been predicted to be much less offensive to the immune system making oats less immunogenic (immune system stimulating) [2,3]. And there have been a number of studies that have suggested oats do not trigger the same type of immune response as gluten [4-11]. However, there have been studies on the other side of the coin that identify an immune response of some type. A recent study of 39 Finnish patients randomized to eat a gluten-free diet with 50 grams of oats daily or a standard gluten-free diet for one year reported more intestinal symptoms and more gut inflammation in the group of patients eating oats [13]. The researchers wanted to find out why this was happening to some Celiac patients. When searching for the mechanism that was causing an oat-sensitivity reaction for some celiacs, they discovered a similar-to-gluten type of immune system response in the intestines. They described their rational as: "We established oats-avenin-specific and -reactive intestinal T-cell lines from these three patients, as well as from two other patients who appeared to tolerate oats. The avenin-reactive T-cell lines recognized avenin peptides in the context of HLA-DQ2. These peptides have sequences rich in proline and glutamine residues closely resembling wheat gluten epitopes. Deamidation(glutamine!glutamic acid conversion) by tissue transglutaminase was involved in the avenin epitope formation. We conclude that some celiac disease patients have avenin-reactive mucosal T-cells that can cause mucosal inflammation. Oat intolerance may be a reason for villous atrophy and inflammation in patients with celiac disease who are eating oats but otherwise are adhering to a strict gluten-free diet. Clinical follow-up of celiac disease patients eating oats is advisable." [12] SUMMARY Although technically there is no gluten in oats, and Celiac Disease is associated with gluten exposure, it is a roll of the dice for celiac patients to eat oats for 2 reasons: given the frequency of contamination of oats with gluten, it is impossible to be assured of a gluten-free oat product. some Celiac patients (and as of yet it is impossible to know who), appear to have an immune system sensitivity reaction to oats similar to gluten. Thus the safest approach at this point, may be to include elimination of oats to a gluten-free diet, allow the intestines to heal (and have that documented with a recheck endoscopic exam), then do an oat-challenge diet and recheck for indicators of an immune-reactivated response (fecal transglutaminase, serum antibody elevations, endoscopic re-evaluation) for the beginnings of intestinal damage reoccurring. This is a timely process (and a nuisance for the patient), but if one wants to eat oats, it may be the only way to be certain of its safety. Bibliography 1) Sollid LM (2002) Coeliac disease: Dissecting a complex inflammatory disorder. Nat Rev Immunol 2: 647-655. 2) Vader LW, de Ru A, van Der WY, Kooy YM, Benckhuijsen W, et al. (2002), Specificity of tissue transglutaminase explains cereal toxicity in celiac disease. J Exp Med 195: 643-649. 3) Piper JL, Gray GM, Khosla C (2002) High selectivity of human tissue transglutaminase for immunoactive gliadin peptides: Implications for celiac sprue. Biochemistry 41: 386-393. 4) Janatuinen EK, Pikkarainen PH, Kemppainen TA, Kosma VM, Jarvinen RM, et al. (1995) A comparison of diets with and without oats in adults with celiac disease. N Engl J Med 333: 1033-1037. 5) Srinivasan U, Leonard N, Jones E, Kasarda DD, Weir DG, et al. (1996) Absence of oats toxicity in adult coeliac disease. BMJ 313: 1300-1301. 6) Hardman CM, Garioch JJ, Leonard JN, Thomas HJ, Walker MM, et al. (1997) Absence of toxicity of oats in patients with dermatitis herpetiformis. N Engl J Med 337: 1884-1887. 7) Reunala T, Collin P, Holm K, Pikkarainen P, Miettinen A, et al. (1998) Tolerance to oats in dermatitis herpetiformis. Gut 43: 490-493. 8) Hoffenberg EJ, Haas J, Drescher A, Barnhurst R, Osberg I, et al. (2000) A trial of oats in children with newly diagnosed celiac disease. J Pediatr 137: 361-366. 9) Janatuinen EK, Kemppainen TA, Julkunen RJ, Kosma VM, Maki M, et al.(2002) No harm from five year ingestion of oats in coeliac disease. Gut 50:332-335. 10) Størsrud S, Olsson M, Arvidsson LR, Nilsson LA, Nilsson O, et al. (2003),Adult coeliac patients do tolerate large amounts of oats. Eur J Clin Nutr 57:163-169. 11) HÖ gberg L, Laurin P, Fa¨ lth-Magnusson K, Grant C, Grodzinsky E, et al.(2004) Oats to children with newly diagnosed coeliac disease: A randomized double blind study. Gut 53: 649-654. 12) Helene Arentz-Hansen1, Burkhard Fleckenstein1,2, Øyvind Molberg1, Helge Scott3, Frits Koning4, Gunther Jung5, Peter Roepstorff2, Knut E. A. Lundin1,6, Ludvig M. Sollid1*, The Molecular Basis for Oat Intolerance in Patients with Celiac Disease, PLoS Medicine | http://www.plosmedicine.org, October 2004 | Volume 1 | Issue 13) Pera¨ aho M, Kaukinen K, Mustalahti K, Vuolteenaho N, Ma¨ ki M, et al. (2004) Effect of an oats-containing gluten-free diet on symptoms and quality of life in coeliac disease. A randomized study. Scand J Gastroenterol 39: 27-31 14) Thompson,T., Gluten Contamination of Commercial Oat Products in the United States, NEJM,Nov.4,2004,2021-22 15) Vader LW, de Ru A, van Der WY, Kooy YM, Benckhuijsen W, et al. (2002) Specificity of tissue transglutaminase explains cereal toxicity in celiac disease. J Exp Med 195: 643-649. 16) Piper JL, Gray GM, Khosla C (2002) High selectivity of human tissue transglutaminase for immunoactive gliadin peptides: Implications for celiac sprue. Biochemistry 41: 386-393. 17) Joint FAO/WHO Food Standards Program, Codex Committee on Nutrition and Foods for Special Dietary Uses. Draft revised standard for gluten-free foods. CX/NFSDU 98/4 July 1998: 1-4, http://intl-spectrum.diabetesjournals.org/cgi/content/full/15/3/197 18) Thompson,T. Oats and the Gluten-Free Diet, J Am Diet Assoc. 2003;103,876-9. Celiac Stories A Young Celiac's Story April 2006 As far back as I can remember I would frequently get stomach pains and cramps to a point where I was bent over crying. Naturally, the doctor said it was just stomach aches, maybe from something that didn't agree with me. I was nine when my mom took me to another pediatrician, for the same reasons. My new doctor wanted me to have an Upper GI. He concluded that I had Acid Reflux Disease and put me on medication. Still, the pain persisted. Soon afterwards, I was diagnosed with Lactose Intolerance, which seemed likely because my sister has it. While the symptoms felt somewhat relieved, I would still experience stomach pain. For six years, I avoided dairy completely. In that span of time, I was tested for other illnesses such as diabetes, because I was still not feeling 100%. Every test came back negative. It wasn't until my first year of college when the symptoms became so severe that I decided it was time to get down to the bottom of things. I had almost completely stopped eating, for every time I ate, my stomach would blow up so much it looked like I was six months pregnant, and the pain was so intense that all I could do was curl myself up in a ball and cry, and just wait until it passed. Right after Christmas of that year, I first saw my primary care physician. She sent me to a gastroenterologist who ran a series of tests on me. I had a sigmyoscopy, upper endoscopy, and he put me on medicine, for once again, Acid Reflux Disease. He also said I could possibly have Irritable Bowl Syndrome and put me on medication for that as well. Within a couple weeks, I had an appointment with him because neither medication was helping me. At this visit, he told me it was in my head and to take up yoga. That was the last time I went to him. Within this time, I was taken to the emergency room twice. My body was so weak and frail, and I was constantly sick. The first time I was in the hospital, I had a CT scan done and, as usual, empty results. The doctor there sent me to a gynecologist, and again, no answers. My second trip to the hospital was pretty much the same. I had x-rays taken and yet another CT scan, which shockingly, showed nothing! At this point, I spent more time in bed then out of bed, and at one time, I lost 11 pounds in just a week and a half. I finally found a gastroenterologist who actually wanted to help me and find out what was wrong with me. He ordered an array of tests to be done on me such as a pelvic sonogram, an upper GI, a small bowel series, a colonoscopy, and blood work for something he called Celiac Sprue. After going through these series of tests, which all came back negative, I received a phone call from one of his nurses one afternoon. She explained to me that my Celiac Sprue level from my blood work came back severely elevated and the doctor wanted to do an endoscopy to confirm the results. I had no idea what Celiac was, or what I was in for. I immediately researched it online and while I was reading about it, I thought to myself, "How am I ever going to deal with this?" I was put on a gluten-free diet and responded to it so well, that within two weeks, my symptoms almost disappeared. From the beginning, I still avoided dairy, but I eventually reintroduced it back into my diet and found that I can only tolerate small amounts of it here and there. I also developed Hypoglycemia and had to learn how to control that as well. Now, I have been a Celiac for a little over a year and I am still discovering the world of our food, and what it is like being gluten-free. I am the only one in my family who has been diagnosed with Celiac Disease. My sister was the only other family member who was screened for it; however, it was negative. At first, it was extremely difficult, especially with cross contamination. Some people think it is ridiculous having an intolerance to wheat, or gluten, and I used to get all sorts of comments and looks because of that, even from some of my own extended family members. With the help of my mom, we tried educating others about Celiac Disease and the foods I can and cannot eat. Also, that it is just not simply, oops- I ate gluten, oh well, but rather, if I ingest gluten by mistake it basically eats away my insides. Over time, they slowly got a grasp on what Celiac is all about, however, to them; it is much easier to ignore it, then to deal with it. At family gatherings, my mom always has food for me, and will bring "my" food over to others houses as well. She'll put it off in the corner so no one else touches it. I learned not to eat from salad bars, or appetizers, which have the same effect of a salad bar with cross contamination. I learned not to trust anyone outside of my immediate family when they say it's "gluten-free." I learned to have my own toaster, jar of peanut butter, mayo, jelly, etc., and LABEL them as mine. My mom has "my" own shelf in her pantry and freezer. I am still learning about Celiac Disease everyday, and how to bake without real flour. I have been attending Anne Arundel Community College for the past two years and will be transferring to the University of Maryland, College Park in the fall and be living on my own for the first time. I am bracing myself for what is ahead, because I know it's not going to be easy dealing with Celiac Disease in that type of environment. We are still figuring out if I will be able to use a meal plan, which is very unlikely, and making sure that I have access to a full kitchen to do my own cooking. Hopefully, I will be able to enrich the universities knowledge of Celiac and increase their awareness about gluten intolerances in regards to their food preparation. The one thing I told my family from the beginning was not to change their eating habits because of me. It took me awhile to realize that this is permanent, that it's not going away, so I have to accept it and learn to live with it. It's still strange not being able to receive communion at church, but that doesn't mean I cannot receive it in my heart. I always look at it this way: it could be a lot worse, and after what I went through, I thank God I can still eat. Like I said, the hardest part is cross contamination, and getting others to understand what exactly it is I have. And watching others eat pizza! Julianne Valle 2006 An Adult Celiac's Story April 2006 I knew there was something wrong with me. My hands and toes were stiff and painful. I would have bouts of fever before the pain would start. I also had terrible insomnia. I went to my family doctor, several rheumatologists, a neurologist, an infectious disease specialist and an acupuncturist over the course of five years. Nobody seemed to know what was wrong. I started to feel like I was going crazy. One doctor even told me "you just have an auto-immune disease of unknown name that you will just have to live with." It was frustrating and made me feel like I was some kind of hypochondriac. Finally, my sister got diagnosed with celiac disease and she told the whole family to get tested. As soon as I was tested and had my small intestine biopsy done, I found out I had celiac disease. Once I eliminated gluten, the pain stopped and I slept better than ever. I also discovered I have hypothyroidism. Several things have been frustrating about the diagnosis and the disease. I kept reading that most celiacs are diagnosed after a dramatic weight loss. Didn't happen to me.....which truly seemed unfair in the whole scheme of things. Then, the doctors said I'd probably lose weight on the diet....didn't happen. I have struggled with my weight over the years so I kind of felt like I was shortchanged....I got a crappy disease and I didn't get to have some of the weight loss associated with it. It sounds a bit silly, but it's just how I felt. One of the more challenging aspects of the disease for me has been the social aspect. I've had a couple of people say to me, "well, I don't know what to make for you so I'm not sure you'll want to come to my house." That has hurt. I've tried to help guide them with what I can eat but I find it can be a tough balancing act of getting the food you need and not getting the hosts in a tizzy. In a way, celiac disease has been like other major life-changing events.....marriage, funerals, births....you end up cleaning up your list of friends during each of those events....eliminating some and adding others. I didn't expect that to happen with my diagnosis and that has saddened me in some ways to discover that some people who I considered friends really have not accepted my reality and have resisted my dietary changes. The other part of this that has surprised me is that celiac disease really has magnified for me how human doctors and health practitioners really are. I was so frustrated at how limited doctors were in their medical knowledge and later after finally being diagnosed, I was upset at the poor guidance I got from dieticians. The best guidance I've gotten on what to eat and what not to eat has been from an online group called the Silly Yaks and from celiac support groups in Annapolis and Northern Virginia. I know when I inadvertently get gluten because my hands hurt and I don't sleep well. Restaurants are definitely the toughest place to be because even those that claim to have gluten-free menus can be a pain. I went on a date with my husband to a Legal Seafood's in Arlington, for example, because they supposedly have gluten-free menus, but after picking three different dishes on that menu (none of which they had that day supposedly), I ended up in tears because they didn't seem to have anything for me. I look back on that incident and think "I shouldhave left right there and then" and even though I didn't do it then, that is what I do now if I can't find something on the menu or the restaurant is unwilling to work with me so that incident served as a proactive learning lesson for me. I live with my husband and two daughters and fortunately none of them have celiac disease and they are pretty supportive of the dietary changes we have adopted in the house. They tend to like the gluten-free stuff more than I do. I've been fortunate to find a lot of different gluten-free foods that I like but I still struggle with trying to find the right balance of how much to eat of them. Since I'm not eating gluten-containing foods, I catch myself eating more gluten-free substitutions to meet that craving. For example, I went to a gluten-free restaurant in New York with my family and ordered like three entrees. I would never have done that in a regular restaurant. I hope with time that craziness will pass. I have two sisters who have celiac disease and while I never would wish this upon anybody, it helps to have their support and understanding. We can joke about it, compare notes and agonize over it. I know they understand and I feel blessed that they do. My emotional state is upbeat most of the time, but I won't kid you and say that it doesn't bother me. I have several friends struggling with aggressive cancers so my celiac disease seems, if you will, smaller compared to those struggles. But, I know that celiac disease is also my cross to bear and when there is a big pizza and beer party or birthday cake to share at someone's house, the isolation can be acute. I'm only in my first year of this and one of the blessings in all of this is that I'm taking better care of myself and trusting my ability to read my body better. I've always had a love-hate relationship with food and celiac disease has changed that relationship. I look at food from an analytical standpoint so food really isn't on my mind as much as it used to be. I guess that is one positive outcome. Ines Alicea Alexandria, VA A Parent of Celiac Children April 2006 I am a Mother of two children with Celiac Disease. My son Aidan, 3, was diagnosed in the Fall of 2005. My daughter Lydia, 5, soon followed with the diagnosis, much to our surprise. Both had blood work and the endoscope to confirm their illness. We were treated by Dr. Fasano at the University of Maryland. Aidan has always been on the "small" side. Both my husband and I are petite. So though we expressed our concerns about his lack of growth, doctors just eyeballed us and said something like, "Well, he is obviously not going to be a line backer." But as a Mom you know when something is not quite right. I couldn't buy him shoes even though he was walking, because they didn't come that small. He was still wearing 24 months at age 3. In addition, he always had loose, floating stools, perhaps 4 to 5 a day. He struggled further with reflux and asthma-like symptoms, particularly in the winter. In the summer of 2005 his health began to deteriorate. He had chronic asthma problems and developed pneumonia. He also began to complain of stomach pain. "My stomach is hot Mommy." Doctor's felt it was a virus, or a side effects of an antibiotic, whatever was going around at the time. In the evening after yet another frustrating visit to the pediatrician's office, my son grew increasingly worse. At 10:00 p.m. that night his stomach grew quite distended and he sat on the couch in my husband's arms crying in pain. I was so confused and frightened yet determined to be more assertive for my child's sake. So I called the pediatrician, at his home, and said "Look, this is not right. He is in extreme pain." Off to the E.R. we went. Only to come home with a diagnosis of diarrhea and abdominal pain probably related to Rotavirus (It was going around.) At the same time this was happening, my husband and I were researching on our own and began to suspect Celiac Disease. So the day after our E.R. visit we followed up with our pediatrician and spoke about Celiac Disease. We asked for blood work. A week later, the results confirmed that he was indeed Celiac. From there we went to see Dr. Fasano. As this disease is genetic, we were all tested. To our surprise and great sadness, we were told Lydia was Celiac too. Looking back, her symptoms were there, just very different then Aidan's. When Lydia was 10 months old her weight began to drop. (About the same time she would have been eating a lot of gluten!) Our pediatrician at the time referred us to a pediatric gastroenterologist. She briefly mentioned Celiac Disease but dismissed it as an unlikely diagnosis. Unlike Aidan, Lydia has always been in the 95% of height. Her symptoms included constipation and almost daily complaints of stomachaches. We were told to increase her fluids and try stool softeners. In addition, Lydia would often awaken in the middle of the night crying her legs hurt. We had her X-rayed twice; no findings. The pediatricians said it was "growing pains." We now know it was joint pain, a symptom of Celiac Disease. Living with the disease...ah, the gluten free life! The good news is that we noticed changes in both children within a week. No more stomach aches! With 6 months of gluten-free food in their bellies both children are doing great. Aidan grew two shoe sizes in a mater of months. His belly is no longer the biggest part of him. He tires less and his asthma-like symptoms have almost disappeared. We were able to manage his colds this winter with just over the counter medication. He is still on medicine for reflux and growth is still slow, though Dr. Fasano thinks he will catch up as it is still early in his recovery. Lydia's stomachaches and joint pain disappeared almost immediately! How do you cope as a family? You don't have much time to think about your emotions because you need to learn quickly as your children are waiting with hungry mouths for their next meal. It is stressful, overwhelming, and confusing to say the least. But you learn as you go. Initially, my husband and I were very depressed. I think I withdrew from friends and family for the first four months. Mostly to take it all in and read, read, read. I cried in the grocery stores walking down isles of food my children would never know about let alone taste. No more free cookies at the bakery department. How was I going to explain this one to my 3 year old? Ugh! I became angry at food and how it dominated every gathering - friends, family, holidays. Was there a get-together where food was not an issue - No! My newest phase of grief - and it truly is a grieving process - is guilt. My husband and I have tested negative thus far. (Though we are looking in to gene testing and will need to get our antibodies checked annually.) We sneak a bagel from time to time, or go for pizza when we have a sitter. We try to enjoy it but we often feel guilty. I know we have more obstacles ahead of us: school lunches, birthday parties, sport celebrations...just to mention a few. I imagine each obstacle we hurdle will tap into different emotions for us all. Sometimes my husband and I will project into the future and feel sad about a certain situation our kids will have to experience that might isolate them. But as my daughter says, "Some day they will find a cure. So keep this candy for me until then." The kids are positive about their illness. We are open and honest with each other but we don't dwell. Kids prefer to socialize and play more often then eat anyway. (We should all try this!) I often mention to them how blessed we are to have them and their celiac bellies. Our kitchen is so much healthier now. And so are we! Nancy McCamish Annapolis, MD P.S. Did I mention that I have never liked to cook and going to more than one grocery store just seemed silly? Boy, am I growing in ways that I didn't plan! |
