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Found 5 results

  1. 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.
  2. Like many people with celiac disease, I spent a lot of years and money to go through many tests and misdiagnoses before doctors finally found my problem. Because of the large variety of symptoms associated with celiac disease, diagnosis can be very difficult. 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 digestive in nature. My symptoms included abdominal pain, especially in the middle-right section while sleeping, bloating, and diarrhea (off and on over a period of several years). 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 one slowly adds these foods back to their diet. It took two years for the doctors to discover that I had celiac disease. 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, tests for bacterial infections and parasites, ultrasound scans, and gall bladder tests. Luckily I ended up reading something about celiac disease in a book on nutrition, which led me to ask my doctor to test me for it. I was finally diagnosed via a biopsy of my small intestine (which is not as bad as it sounds). Although the biopsy is still considered the gold standard of diagnosis, there are also several blood tests for celiac disease. I decided to create this Website 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 the Celiac Listserv News Group, and posted it all right here. Please remember that I am not a doctor, and none of this information should be considered expert medical advice....enjoy! - Scott Adams
  3. 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.
  4. Hi all. I am sorry if this gets long, but I have a story to tell and I think if I tell it to people that understand and relate I will feel a lot better emotionally. Even if no one reads anything this long. I remember having my first health problems my first day of second grade, that was 30 years ago. I had the worst headache and puked up my spaghetti on the principle's shoes. The first of many migraines. They started out just a few a year and then gradually increased to the point that my mom was taking me to a specialist. They swore up and down that childhood migraines were so rare and I didn't have them. How right they were. They just kept gradually getting worse and more frequent which then led to years and years of tests, ER visits for pain, hospital stays for intense vomiting. Those are they only symptoms I had until I was 17. At 17 I started getting stomach aches all the time, sometimes followed by vomiting, D or C ( either one depending on which one the gods felt I needed to go through) and intense pain. More doctors visits, more tests, more BS. You are constipated, you have IBS, you have a stomach virus, more BS. I learned to deal with it and quit frequenting the doctor so much. I was also breaking bones, some of them multiple times. Around 20, I started gaining weight. I have always been a little on the thin side, always had a low BMI, so when I gained 50 pound out of the blue I was concerned. I also started getting a tingly sensation in my arms and hands. Off to the doctor I go, more tests, more BS, yada, yada, yada. This time it was muscular, off to the physical therapists. Didn't work. Imagine that. After about three years of more testing to figure out why the physical therapy wasn't working, I started to get awful back pain. I also started to get weird reactions to food. My lips were swelling after eating, constant runny nose, rashes. Off to the allergist and off to a back specialist. More testing, more ah crap, you know the drill. The lip swelling cleared and no food allergies. Amazingly I wasn't tested for wheat. Fast forward a year and I end up pregnant with by boyfriend. I ended up with a tubal of one baby and a vaginal miscarriage of the other. Guess what, twins. I had to have surgery for the tubal. At this time I heard that on of my co-workers said " she just got her period late". They were fed up with all the missed work I had and thought I was making it all up. Hard things to swallow. A few months later I got pregnant again. This time the fetal heart tones were too low and I ended up getting a D&C after the heart tone was Zero. No late period this time. About six months later my migraines were getting progressively worse, I was getting about three a week some weeks. More testing, different doctors, and more BS. This time it Polycystic Ovarian Syndrome. Hormone replacement therapy. It didn't work. We then tried a ton of different rescue meds for when I get the migraines. None of them worked. HMMM. Then we tried medications for prevention. Some of them were anti-depressants cause "hey I'm depressed I just lost three babies". They didn't work, didn't help with the mood swings that I had attributed to the lost pregnancies. Mean while, I am planning a wedding with the man I was pregnant with. Two months before my wedding I found out I was pregnant. Sicker than a dog with morning sickness, hellacious migraines, swollen feet at two months ( was concerned, was blown off). I then started to have some other problems as my pregnancy progressed. I was having stomach pain all the time, racing heart, the vomiting never ceased, and awful heartburn. I was going to the doctor multiple times a week trying to figure out what was wrong. On March 28th 2003 I went to the ER because I wasn't feeling well at all. I had just been diagnosed with pneumonia a few days before and I have an awful migraine and just felt like over all poo. My aunt came and picked me up. When I opened the door she suggested that maybe I pack a bag. I guess I looked as bad as I felt, or worse. She thought I was going to die on the way to the hospital. When I got there, my blood pressure was 220/180. Doctors told me I was lucky I didn't stroke out and die. Was immediately admitted and treated for preeclampsia. They then induced me, which didn't work at all. It was three days of hell. On Monday morning March 31st 2003, I was rushed into emergency surgery because they couldn't pick up the babies heart rate and my blood pressure was sky high. They were running down the hall way trying to give me drugs on the way and then my blood pressure bottomed out. From what I heard, my daughter was born without a heart rate and not breathing, they had to resuscitate her. Glad I wasn't there for that. Also learned that my placenta was 80% dead. I woke up half a day later to learn I had a baby girl. Spent eight days in the hospital and almost died, but it was worth it. Fast forward four months, my milk dries up. No cause what so ever. I have also lost 60 pounds since the baby was born. But hey, I just had a baby. About five months later I couldn't walk up the stairs, I had profuse sweating, rapid heart rate, hair falling out. Then I couldn't even pick up my daughter. I was at work one night as a lab tech when I started asking my co-workers what they thought it would be. Everyone said thyroid. They drew my blood and off to test my TSH, T3, and FT4. Hell, I will be my own doctor now. Grave's disease. I went to the doctor the next morning, was told I had a huge goiter ( I some how never noticed it until it was pointed out), and my heart rate was through the roof. Was admitted to the hospital, was told I was hours away from a thyroid storm. Another close call with death. Get the radioactive iodine and things improve. UNTIL..... I am still dealing with the migraines, I am on FMLA at work so I can keep my job, and I find out I am pregnant again. My endo told me it would be impossible for me to get pregnant with my TSH so high. It was 80. We had a very hard time regulating my TSH. I had just switched hospitals, so I had a new doctor. He wanted to see me quite frequently for the first few months, they were good months. Until I hit 3 months. Migraines with auras four times a day. I had to go on bed rest. My son was born 2 months premature at 3 pounds 6 ounces and spent a month in the NICU, that was March 23rd 2005. My placenta was also very dead and there was almost no amniotic fluid. I am lucky they were monitoring me so close or my son would have died. My OBGYN actually bluntly told me he was going to die and then promptly left the room. She was fired that day. I lost my job due to missed work shortly after I had my son. Then came the year long struggle with nausea, awful pain under my ribs, no matter what I ate I felt like crap. It was an inactive gallbladder. More surgery. Felt a little better for a little while. Things from there just got worse. Weight fluctuations from one extreme to the next, the tingly sensation in my arms then went to my back and neck and was no longer tingly, it was painful. More testing, find a mediastinal ( I sure am glad I took all those medical terminology courses in school) mass surrounding my aorta. More testing. PET scans, CT's, referrals. The pulmonologist said it was a broncho-somthingerother cyst ( I am calling brain fog) and it needed to be removed. The surgeon he sent me to said that it would be to risky of a surgery and didn't think it was causing my pain. He referred me to Mayo. Back to another Pulmonologist. He tested me for everything under the sun, couldn't determine what the damn thing was. " It needs to come out". Off to the head of the Cardiothoracic department of Mayo Rochester. I am someone special now. He agreed, explained it would be an extensive surgery to get it out. They would have to make an incision from the front of my chest in-between my breasts, and loop down below the right and continue to the middle of my back. While they are explaining this to me he gets a call from the CT people and the thing has grown. It's Friday, we are going to do the surgery Monday. I go home, get my affairs in order, I am going to be in the ICU for a week and then in physical therapy for three before I can come home. I won't see my kids in a while. I am wheeled into the operating room Monday morning still awake. I look up to a gallery full of people, guess the surgery was a big deal and they wanted to watch. They were disappointed! They decided to do a small incision in my neck and look at it with a scope. The then sliced it up the middle and slid it out. I was in the hospital that morning for 7 hours and then filled full of drugs and sent on my way. I was back to work six days later. Lucky me. A month later I left my husband. Best thing I ever did. He saw all my sickness as a burden, was never supportive. I lost 30 pounds right away. Pretty soon, I was losing weight, sick all the time, tired all the time. More tests, more no answers. I lost another job due to missed work. Fast forward to January 30th 2014. I was very ill and in lots of pain so I went to the ER. Had a CT scan done, all that was noticed was an inflamed appendix. Did some labs, no increased WBC, no fever, no sign of infection. Sent home. Meanwhile, the brain fog is so bad I am starting to think I have early Alzheimer's. By the end of March I was so sick I had been to the doctor 8 times in a month. Someone finally sent me to GI. The admitted me to the hospital and schedule my endoscopy and labs for the next morning. I wasn't sure what they were testing for, I had just come out of the procedure when they told me. Sent me home, made an appointment for two weeks later. Diagnosed with Celiac on Monday April 7th 2014, they think I have had it since birth. My daughter was diagnosed a few weeks later, same with her. Had never heard of it. I was just so happy I had a diagnosis. My GI walked me through the beginnings, I read a lot on here, and I set myself to work. You know the drill. Two weeks ago, I was again seen in the ER. My appendix is still inflamed, still no elevated WBC or fever. Given anti-nausea meds, pain meds, told if the pain and vomiting get worse to come back. I'm back six hours later. They repeated all tests ( to make sure something didn't change in six hours), was ready to send me home again. I refused. Got my s$#&ty (literally, it was impacted with stool) appendix out two days later. That morning I had a colonoscopy and the surgery was a triple header ( they fixed a hernia that they had discovered during the CT's, my appendix out, and they explored my lower belly). Yay, more holes and scars. Since my diagnosis I have found out I also have diverticulosis, slow intestinal movement, osteoarthritis in my spine, an elevated ANA ( more testing to figure out why), and all the other related deficiencies that we like to have. To date I have lost 168 pounds and they just keep flying off. I have had three glutenings in the last two months ( accidental, I didn't go eat that blueberry donut I have been craving). I was at the doctor on Friday and had lost 6 pounds since my surgery ( went from taking three anti-nausea pills a day to three in two weeks) so I would say my surgery has been successful. I have been eating up a storm. My TSH is high so I should at least be leveled off on the losing. Went to the doctor Monday morning and had lost two more. My GI thinks there is something else going on. I have to keep a diary until July 8th of everything. What I eat, calories consumed, what I drink, when I poop, everything. Then if I have lost more than ten pounds on my next appointment, it's off to the hospital for more testing, nutritional therapy, more BS. Does it ever end? One good thing is I haven't had a migraine in over two month. Childhood migraines are really rare LMFAO I called my GP this morning to see if I could get on an anti-depressant, this is all too much to take. Well, it took a lot longer to write about thirty years than I thought it would. If you read this, Thank you for taking the time. I hope you didn't see too much of yourself in this. If you didn't read it, that's ok. I already feel a little better just getting it off my chest.
  5. 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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