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Found 10 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. My daughter was diagnosed with Celiac via endoscopy/biopsy and had other indicators such as blood counts and vitamin/mineral deficiencies. At first, it seemed that she was incredibly sensitive to any cross contamination. Now, several years later and well into recovery, she has gotten accidentally glutened several times with seemingly no adverse effects. Is that even possible? Could the initial diagnosis have been incorrect? Or once the gut has healed, can a Celiac sometimes tolerate occasional exposures better? Thank you for your insights.
  3. Looking to see what else other may have seen or experienced. My 5 yo daughter had issues with gluten since birth. I had been gluten free for 4 years before being pregnant with her. ( I was not diagnosed celiac, had gene test, positive, antibody test negative. later figured out I was IgA deficient, but already gluten-free diet by then) Anyway, I got glutened when exclusively breastfeeding her, she had diarrhea for days until it cleared my system. Diarrhea reoccurred when she had milk pumped from that time period. Fast forward to solid food introduction: she had diarrhea when she tried wheat foods around 12 mo old. I make everything at home gluten free, so she tried gluten at grandmas. Decided to skip wheat, since washing diarrhea diapers is no fun. She was probably glutened some times during toddlerhood, as toddlers put everything into their mouths. At three, we decided to try a gluten challenge, which in hindsight, really messed up potty training. She had alternating constipation for days, then followed by a couple days of diarrhea. After 10 weeks, her antibody tests were negative, her IgA ok, her gene test positive. I skipped endoscopy for $$ reasons, but returned to gluten-free and her BMs became normal consistency and regularity again. Since then, she had occasionally been glutened, usually an oops at daycare or gluteny playdoh. Last time we knew she was glutened was regular playdoh at preschool in Sept 2016, after which we bought her gluten-free doh and gluten-free toys for her to have in class. AND potty training issues greatly improved over this past year. BUT just three weeks ago, she got into a regular ice cream sandwich...and there were no diarrhea poops. So last week, I fed her one whole piece of gluteny bread....and no diarrhea. So I'm torn about what to do! Has she outgrown something? Is she 'silent' in her symptoms now? I know the Dr would say go back to gluten and retest if symptoms return. But mommy bear worries if silent symptoms would hurt her during years of growth? Or maybe I'm overthinking and she'll be just fine for the rest of her life?
  4. Celiac.com 04/25/2017 - A recent issue of JAMA, the US Preventive Services Task Force (USPSTF) critically examines screening for celiac disease in asymptomatic adults, adolescents, and children. Celiac disease exhibits a broad spectrum of symptoms, from subtle or no symptoms to severe malabsorption. Celiac diagnoses have increased significantly over the past few decades, in part because of greater awareness, but possibly because of an actual increase in disease rates. Researchers estimate current rates of celiac disease at 0.71% among US adults, and 0.76% among US children. However, most celiac disease in the population remains undetected, despite wide availability of accurate serologic tests. Screening may be a good way to detect the disease, especially in people who have known risk factors, but have not yet developed symptoms. Noting a profound lack of supporting evidence in the medical literature, the USPSTF states bluntly that "the current evidence is insufficient to assess the balance of benefits and harms of screening for celiac disease in asymptomatic persons." The group recommends more research in this area. USPSTF admits its review of this topic might be criticized as premature, but emphasizes the need for data to provide direction with regards to best practices. The group used rigorous methodology to assess the effectiveness of celiac disease screening in an asymptomatic population, and found the resulting evidence to be thin in inconclusive. Their conclusion and recommendation will likely disappoint numerous clinicians, and more than a few patients. By design, the task force focuses solely on asymptomatic persons, or persons with unrecognized symptoms. They note that screening the general population could potentially detect not only asymptomatic patients, but also patients who lack typical symptoms such as weight loss, diarrhea, or malabsorption. In summary, current evidence on the effectiveness of screening for celiac disease in asymptomatic populations is scarce or absent and certainly insufficient to recommend for or against screening, as indicated in the USPSTF Recommendation Statement. Remember, the USPSTF is not anti-screening, they are pro-screening evidence. Since most celiac disease is undetected, and may present with variable symptoms, the group states that it is "reasonable that clinicians should have a low threshold for testing for celiac disease, especially in high-risk populations such as those with an affected family member or type 1 diabetes mellitus." Clinicians should routinely seek information on the patient’s family history of celiac disease. As celiac testing becomes easier and cheaper, and as gluten-free food becomes more available, it becomes more important for researchers provide the data to determine the best practices for screening and treating celiac disease. They stress the need for more comprehensive studies to assess best celiac screening practices in both high-risk groups, and in the general population, which includes most people with undetected celiac disease. The also note the possibility that the rise in gluten-free dieting by people without an official celiac diagnosis might be an indication of the uncertainty of current screening and diagnostic approaches. Source: Jamanetwork.com
  5. Celiac.com 11/10/2015 - Doctors might not need a biopsy to accurately diagnose celiac disease in asymptomatic children who have elevated anti-tTG, according to the latest study. In that study, researchers in Italy evaluated a new biopsy-sparing protocol for diagnosing celiac disease in symptomatic children with high anti-transglutaminase (anti-tTG). Their data showed that this approach might also work in asymptomatic children with elevated antibody levels. In 2012, the European Society of Pediatric Gastroenterology, Hematology, and Nutrition (ESPGHAN) published guidelines that said biopsies could be omitted in children and adolescents with signs and symptoms of celiac disease if they met certain guidelines. Dr. Francesco Valitutti of Rome's Sapienza University led a team that set out to assess the accuracy of serological tests to diagnose celiac disease in asymptomatic patients in 286 children and adolescents who had been diagnosed with celiac disease. Among 196 patients with anti-tTG antibodies at least 10 times ULN and EMA positive, 156 had symptoms and 40 were asymptomatic. More than 90% of the symptomatic children (142/156, 91%) showed severe lesion degree on biopsy, and an even higher percentage of asymptomatic patients (37/40, 92.5%) had severe lesions. There was no significant difference in histological damage between the "high-titer" symptomatic and asymptomatic children, according to the September 15th online report in The American Journal of Gastroenterology. Among the EMA positive children with lower titers of anti-tTG antibodies, 70% of symptomatic children and 81% of asymptomatic children showed severe lesions. The researchers add that asymptomatic patients should follow a gluten-free diet "as strictly as symptomatic ones, in order to prevent other autoimmune diseases and enteropathy-associated T-cell lymphoma." Otherwise, the new guidelines apply to patients with: TTG > 10 times ULN; an EMA of at least 1:80; a positive repeat serology to exclude laboratory error; HLA-DQ2 and/or -8 positivity; and a serological response to a gluten-free diet. If the research team can confirm these results in larger, multi-center prospective studies, their 'biopsy-sparing' protocol might be made available "to both symptomatic and asymptomatic patients with anti-tTG antibody titer (at least) 10 times the upper limit of normal (ULN) and anti-endomysial antibodies (EMA) and HLA-DQ2/DQ8 positive," Dr. Valitutti told reporters. Source: Am J Gastroenterol 2015
  6. Hello! I'm a newly(ish) diagnosed celiac, 8 months on GFD. My symptoms prior to diagnosis were mild, once-daily diarrhea and cramping, but nothing debilitating, I never had any weight loss or signs of malnutrition. Diagnosed after blood test and endoscopy. Six months on the GFD (I follow strictly, overseen by a gasto and dietitian) my blood tests had all bounced back to normal, all my nutrient levels are perfect, BMs fine. Well, this weekend I slipped up after a late night out (I'm 25f) and had a piece of pizza! I was expecting the worse, but woke up the next morning, had one mildly loose BM, and that was it. Several days have gone by now, and I feel fine. Being relatively new to celiac I have to ask: are there people out there like me who aren't as sensitive? I have no plans to quit GFD, because I know that I could still be doing major gut damage, even if I feel fine. But since it sounds like most people get sick from even small amounts, I'm not sure if my case is strange, or if people like me just aren't as active on forums like this. I will be seeing my gastro for a check-in soon, so is this something I should bring up? Thanks!
  7. Celiac.com 10/15/2014 - A team of researchers recently set out to assess the benefits of a gluten-free diet for people whose blood screens show markers for celiac disease, but who show no physical symptoms. Specifically, they investigated whether screen-detected and apparently asymptomatic adults with endomysial antibodies (EmA) benefit from a gluten-free diet. The research team included K. Kurppa, A. Paavola, P. Collin, H. Sievänen, K. Laurila, H. Huhtala, P. Saavalainen, M. Mäki, and K. Kaukinen. They are variously associated with the Tampere Center for Child Health Research, the Tampere School of Health Sciences of the University of Tampere and Tampere University Hospital, the Department of Gastroenterology and Alimentary Tract Surgery at Tampere University Hospital and School of Medicine, University of Tampere, the UKK Institute in Tampere, Finland, the Research Program Unit of the Immunobiology and Haartman Institute at the Department of Medical Genetics of the University of Helsinki in Helsinki, Finland, and the Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital and School of Medicine, University of Tampere, Tampere, Finland and Seinäjoki Central Hospital, Seinäjoki, Finland. For their study, they conducted a prospective trial of 3031 individuals at risk for celiac disease based on screens for EmA. They found 40 of 148 seropositive individuals who fulfilled inclusion criteria. They randomly assigned the 40 patients to groups receiving either a gluten-free diet, or a gluten-containing diet. They then evaluated ratios of small-bowel mucosal villous height:crypt depth, serology and laboratory test results, gastrointestinal symptom scores, physiologic well-being, perception of health by a visual analog scale, bone mineral density, and body composition at baseline and after 1 year. From that point on, they switched the group on the gluten-containing diet to a gluten-free diet, evaluated them a third time. Patients in the first gluten-free diet group remained on that diet. After 1 year on the gluten-free diet, the mean mucosal villous height:crypt depth values increased (P < .001), levels of celiac-associated antibodies decreased (P < .003), and gastrointestinal symptoms improved compared to patients on gluten-containing diets (P = .003). The gluten-free diet group showed less indigestion (P = .006), reflux (P = .05), and anxiety (P = .025), and better overall health, based on the visual analog scale (P = .017), compared gluten-containing diet group. Only social function scores improved more in the gluten-containing diet group than in the gluten-free diet group (P = .031). There were no differences between groups in terms of lab test results, bone mineral density, or body composition. Most measured parameters improved when patients in the gluten-containing diet group were placed on gluten-free diets. No subjects considered their experience to be negative and most expected to continue eating gluten-free. The results show that a gluten-free diet benefits asymptomatic EmA-positive patients, and show the benefits of actively screening patients at risk for celiac disease. Source: Gastroenterology. 2014 Sep;147(3):610-617.e1. doi: 10.1053/j.gastro.2014.05.003.
  8. Celiac.com 06/13/2011 - Serological screening of asymptomatic people at risk for celiac disease is an effective method for spotting the disease and prompting early treatment, according to the results of a study by researchers from Finland, presented at Digestive Disease Week 2011. The study team showed that diagnosing and treating celiac disease in its earliest stages is beneficial in most screen-detected asymptomatic patients. Most of the patients the team studied were willing to continue on a gluten-free diet. On that basis, they assert that it is reasonable to screen at-risk groups. Lead author Kalle Kurppa, MD, from the University of Tampere in Finland noted that about 2% of the population has celiac disease, but that 90% of affected persons are never formally diagnosed. "Screening for celiac disease is problematic, and treatment is difficult. It is also unclear whether early diagnosis and treatment of screen-detected celiac disease is truly beneficial," Dr. Kurppa said. The study team set out to assess the benefit of adopting a gluten-free diet in asymptomatic adults with positive endomysial antibody (EmA) serological screens. For the study, the team recruited 3031 relatives of patients with celiac disease. Of these, 148 showed positive EmA scans. 40 of these patients agreed to be randomly assigned to continue their gluten-containing diets (n = 20) , or to start a gluten-free diet (n = 20). In addition to screening for EmA testing, the study team tested for transglutaminase 2 antibodies, and surveyed patients using the Gastrointestinal Symptoms Rating Scale and Psychological General Well-Being instrument. The team evaluated laboratory parameters, celiac-specific genetics, bone mineral density, and body composition, along with small bowel mucosal morphology and inflammation. The team assessed patients at baseline and again after one year, at which time 18 of 20 control patients chose to begin the gluten-free diet as well. The team observed improvements in all patient parameters. The gluten-free diet group showed mucosal healing (changes in the villous height/crypt depth ratio); the control patients did not (P < .001). As senior investigator Katri Kaukinen, MD, PhD, explained in a press briefing: "After one year, those on a normal gluten diet had persistence or even a worsening of mucosal lesions, but those who started on a gluten-free diet showed recovery of the mucosa. The difference was really significant at one year." The group on the gluten-free diet also showed significantly reduced EmA titers (P < .001) and transglutaminase 2 antibody titers (P < .001) from baseline, along with improvements in symptoms (P < .001) and quality of life (P < .001), compared with the control patients. Control patients who switched to a gluten-free diet showed similar changes in all areas, except for quality of life after 1 year. Average laboratory readings, body mass index, and bone mineral density all registered within normal ranges at baseline, and showed no significant changes with the intervention. Also, folate and vitamin B12 levels showed substantial improvements on the gluten-free diet. Overall, patients had positive attitudes toward screening and the dietary intervention, Dr. Kurppa pointed out. Twenty-seven patients (67%) reported adherence to the gluten-free diet, 10 patients (25%) reported minor lapses, and only 3 patients (8%) reported a lack of adherence. Thirty-four patients (85%) were open to maintaining the gluten-free diet going forward. Five percent of patients found the gluten-free diet 'easy', Sixty-seven percent found it 'quite easy', while just thirteen percent of patients found if 'difficult.' Somehow, fifteen percent were "uncertain" about that question. Over half of the patients found the serological screening to be positive or very positive, and none found it to be a negative experience. Dr. Kaukinen noted at the press briefing that although patients first showed few, if any, symptoms, they reported feeling much better on the gluten-free diet. "We don't know why celiac patients have these different clinical phenotypes, why some get severe symptoms and others do not," said Kaukinen. It could be that people adapt to minor symptoms, and only realize their symptoms after they are gone. "Some patients told us they felt totally different on the diet," she added. Dr. Kaukinen says that the goal of early detection is to prevent worsening of symptoms, vitamin deficiencies, and possibly a loss in bone mineral density. "If we see early signs of disease, why should we wait when we can do something for them now?" she asked. Source: MedScape.com: Digestive Disease Week (DDW) 2011: Abstract 620. Presented May 9, 2011.
  9. Celiac.com 12/30/2004 - A new study on celiac disease was presented at the 69th Annual Scientific Meeting of the American College of Gastroenterology by S. Devi Rampertab, MD, from the North Shore Long Island Jewish Health System in New York. The study looked retroactively at 590 patients with a celiac diagnosis confirmed by biopsy from 1952 to 2004. They found that since 1980 the patient age of diagnosis has increased from 30.5 to 42, and the number of cases diagnosed after significant diarrhea decreased from 91% to 37%—and the time period from the development of the disease to its detection decreased from 11 years (before 1980) to four years now. New blood screening techniques are credited for the earlier detection of the disease, and the resulting decrease in the percentage of patients diagnosed after the development of a malignancy—which decreased from nearly 22% before 1980 to just over 5% now. The positive trends noted in this study further support the use of widespread serum screening to detect celiac disease, as it can prevent many of the complications caused by the disease. One thing that isnt clear, however, is why the age of diagnosis is getting higher—even though Italian studies have determined through mass-screenings that celiac disease is present in at least 1% of all children. Since that number is consistent with the number of people in the USA with the disease, it stands to reason that celiac disease may in fact be a childhood disease, and if so, the 42 year-old average age of diagnosis in the USA would indicate a massive failure of our health care system to detect the disease. More studies need to be done to determine the number of children in the USA with celiac disease. Since most celiacs have little or no symptoms—Celiac.com believes that the only reasonable way to get them properly diagnosed and treated would be to have widespread serological screenings of the general population. The disease affects at least 1% of the population in the USA, and the benefits for such screenings would far outweigh their cost.
  10. J Pediatr 2000;137:356-366. Celiac.com 10/10/2000 - Researchers from the University of Colorado School of Medicine, Denver have determined that transglutaminase (TG) antibodies in asymptomatic children are 70% to 83% predictive of biopsy evidence of celiac disease, and may identify children who are likely to develop the disease, as reported in the September issue of the Journal of Pediatrics. Dr. Edward J. Hoffenberg and colleagues studied 30 asymptomatic children who had a genetic risk for celiac disease to determine the relationships between TG antibody titer, small bowel histology, growth, and clinical features of celiac disease. Using the Marsh System to grade the small bowel histology Dr. Hoffenberg that out of 30 children with a positive TG antibody test result - 21 (70%) had definite (Marsh score 2 or 3) and 4 (13%) had possible (Marsh score 1) biopsy evidence of celiac disease, further, the TG antibody titer correlated with Marsh score.
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