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  1. I had a rant here about 3 months ago after I received the results of my own biopsy, and was advised to go gluten free anyway, which I still haven't done but I'm experimenting with foods and hope to be gluten free soon. I wanted to come here and ask your advice again, because my dad had a biopsy about 4 weeks ago, the results of which came today, and I am so surprised to read they're negative. They told him it was very likely that he had celiac because his blood test was transglutaminase positive. He has low iron, low vitamin D, reflux, and his long-term symptoms of M.E/Chronic Fatigue Syndrome which I know are also common symptoms of celiac. Everyone was sure he might have it, so I don't understand why his biopsy was "normal with no evidence" of the disease. The letter does however suggest further blood tests to see if he might develop celiac disease in the future. If his immune system is attacking and it's showing in his blood, doesn't that mean he's already developed it? Why would it do that if he didn't have celiac going on now? I've been encouraging him to try gluten free bread and biscuits but he's been reluctant, now he definitely won't. Should he? Or should he wave the whole thing off and continue eating his sandwiches like he did quite happily today? I guess they will tell him at the appointment. It's just so ridiculous because after he eats wheat he gets reflux! I was also counting on his results being positive... Sorry I'm rehashing my story now, but since 2011 I've had severe, chronic reflux that has gotten worse with time and has remained a mystery after a barium, manometry and two endoscopies; IBS; light headedness/heavy/cotton wool head with brain fog; headaches and jaw pain; muscle pain and severe weakness; sensitivity to noise, light, and heat, also the sun; fatigue and crashing after activity; bone pain; also severe acne that only responds to antibiotics; dry and flaky skin; brittle, cracked and peeling nails; year-round allergies, like having a mild cold permanently; and the occasional mouth ulcer and bleeding gums. The absolute worst is the reflux, followed by the IBS and then my head. I haven't been able to spin in a circle for years. I can't dance. Can't exercise. I feel so dizzy and sick all the time. Can't bend over or lie down with the reflux. Have cut out all acidic foods and FODMAPS. I am underweight. The reflux doesn't allow me to drink much water now because it feels like I have a little ocean of acid/bile sitting in my esophagus and drinking just adds more to it. So my throat has been so dry for months now. Barium and endoscopy both showed acid/bile sitting there, and a hernia. Manometry presumably showed no reason for reflux like a problem with the wave or a loose LES. But my blood work was negative and then my biopsy was negative. I cried on my friend's shoulder when I got that letter, and I've been counting on dad's results since. Now... Now what? I haven't heard from the hospital in 3 months, since my results came back. I don't know if they're waiting to figure out my father before figuring out me, or if they've discarded me. They told me I'm difficult. So I'm looking for gluten free foods but it's difficult without medical support, and being the only one in the house that wants to be gluten free, cross contamination is going to be a constant threat. Just persuading them to have a second toaster is a battle in itself. (Gluten free pancakes are all very well, but not if I put them in that toaster!) Honestly, I'm at my wits' end. I haven't been healthy since 2011. I'm only 28. I don't remember what it feels like to not have reflux, acid, bile; to eat anything with no pain or gas or toilet trips; to spin in a circle or go to amusement parks; what it feels like to have a clear head. I avoid sunny days. This was all triggered and set off at the end of 2011 by panic attacks and a hospital stay. Oh, I forgot to mention that my stools are often pale, like beech furniture (that might be a strange comparison!). I've really just... had it. So I'm not really sure what I'm asking... should we both go gluten free despite negative biopsies? Or might we just have M.E/Chronic Fatigue Syndrome, which my dad was diagnosed with 18 years ago? Thank you for reading!!
  2. I'm not exactly sure what to do at this point if what I am reading is correct. I don't want to go into too much detail right off the bat but I can tell you more if needed. I had an allergy test done, they messed up the first time and did a small panel, but my Whey Allergin, IgG came back as 32.20. Ref range: 0-88.60 mcg/mL In the notes it says "values less than 2.00 mcg/mL represent absent or undetectable levels of allergen-specific IgG anitibody. Values 2.00 mcg/mL and above indicate progressive increases in the relative concentration of allergen-specific IgG." This is where my doctor sent back for a full 96 allergy test, but he was concerned about any cross-reactivity due to the Whey results so he requested a Celiac panel as well. Everything on the food allergies came back as negative, besides some environmental allergies that were already tested previously and noted before. Could you please tell me your thoughts on the results? I think they might be negative. But if so, what do I do now? Should I request some other testing? Let it go? I would love to get some relief though and find out what is wrong with me. I fell like I have many of the symptoms that have been attached with Celiac disease. Not that I'm saying I would like to be diagnosed with something but if I were diagnosed it would make my medical history make much more sense. If you would like more detail on symptoms I can outline them. For Gluten Allergen, IgG, Casein Allergen, IgG and Whey Allergen, IgG (The Whey was the one on the first set of tests though) it says "Request Credited -- ORDINC; Test ordered incorrectly" Here are the results for Celiac Disease Panel: IgA - Result - Sufficient Gliadin IgA Ab - Result - 10.3 -- Ref Range - 0.0-14.9 Tis.Transglut.Ab IgA - Result - <0.5 -- Ref Range - 0.0-14.9 the notes section is not helpful at all. And I guess they didn't do the IgG so should I be asking them to do that? The doctor has to send it to a different lab than the one they use due to insurance. Thank you all in advance!
  3. Hello everyone I am new to the site but suspect I have something going on due to all my symptoms and so purchased a biocard home testing kit. I read the result before 10 minutes and it was negative. Before I went to bed I had an urge to look again and sure enough there was a red line showing positive. This was however after the 10 minute limit. My question is has anyone done a similar thing and gone on to receive a positive result from the dr? Many thanks for any help and advice.
  4. Celiac.com 10/13/2017 - Tissue transglutaminase (tTG) immunoglobulin A (IgA) testing is a sensitive adjunct to the diagnosis of coeliac disease. The threshold for positivity was developed for diagnosis, with negative results reported as below the reference value (<4 U/mL). A team of researchers recently set out to investigate if an undetectable tissue transglutaminase IgA antibodies (tTG IgA<1.2 U/mL) is more predictive of healing compared to patients with negative but detectable serology (1.2-3.9 U/mL). The research team included H. Fang, K. S. King, J. J. Larson, M. R. Snyder, T. T. Wu, M. J. Gandhi, and J. A. Murray. They are variously affiliated with the Department of Medicine, the Division of Gastroenterology and Hepatology, the Division of Anatomic Pathology, the Division of Clinical Biochemistry and Immunology, the Division of Biomedical Statistics and Informatics, and the Division of Transfusion Medicine at the Mayo Clinic, Rochester, MN, USA. The research team conducted a retrospective study of 402 treated coeliac disease patients seen at the Mayo Clinic with negative tTG IgA values drawn within 1 month of duodenal biopsy between January 2009 and December 2015. The team used Corazza-Villanacci scores to assess mucosal healing, and logistic regression to assess the relationship of clinical variables with a normal biopsy. They also noted the presence of gastrointestinal symptoms. Their results showed that patients with undetectable test levels more frequently had normal duodenal histology, as compared with patients with detectable tTG IgA levels. Asymptomatic patients more often showed normal duodenal histology as compared to symptomatic patients. Patients with undetectable blood levels, and who followed a gluten-free diet for ≥2 years were more likely to have no villous atrophy, as compared to patients with detectable blood levels. Follow-up biopsies revealed that people recovering from celiac disease with negative tTG IgA serology showed that undetectable test levels are associated with normal histology. Source: AP&T
  5. Celiac.com 06/29/2012 - A group of researchers recently set out to study cases of positive tissue transglutaminase antibodies with negative endomysial antibodies to determine whether or not such cases amount to celiac disease. The team included Thomas Hornung; Pavel Gordins; Clare Parker; and Nicholas Thompson. They are variously affiliated with the departments of Gastroenterology, and Immunology at the Northern Deanery of Newcastle upon Tyne, and with the department of Gastroenterology at Freeman Hospital in Newcastle upon Tyne in the UK. The most sensitive and specific blood tests for diagnosing celiac disease are those that detect immunoglobulin A (IgA) antibodies against human tissue transglutaminase (tTGA) enzyme, and those that measure aspects of connective tissue covering individual smooth muscle fibers, endomysial antibodies (EMA). Because of the high sensitivity (up to 98%) and high specificity (around 96%) reported for the tTGA assay, detection of tTGA is currently the primary blood test used in screening for celiac disease. The tTGA test also has a high negative predictive value approaching 100%, which makes it an excellent test for excluding celiac disease in both high and low risk groups. In contrast, positive predictive value of the tTGA test is rather poor with values between 28.6% and 60.2% being reported in several studies. EMA, on the other hand, has extremely high specificity values close to 100% and positive predictive value values approaching 80%.[5 10] However, compared with tTGA, EMA has lower sensitivity, usually under 90%. This being the case, the present standard celiac disease screening strategy is to first use tTGA, and then confirm positive results using EMA. However, doing it this way, doctors often end up with a group of patients who show divergent test results. For their study, the researchers wanted to gauge the percentage of patients with positive tTGA and negative EMA, but who were confirmed with celiac disease upon biopsy, and to identify factors in these patients that may help to increase diagnostic accuracy in such patients. The research team identified 125 consecutive patients with positive tTGA and negative EMA, who subsequently underwent endoscopy with at least two biopsies from the second part of the duodenum. The team charted any tTGA result over 15 U/ml as positive. They excluded any patients with known celiac disease at the time of testing. They then reviewed patient notes to assess indications for celiac disease serological screening, including the presence of iron deficiency anaemia, and symptoms such as diarrhea or weight loss, and family history of celiac disease. They defined diarrhea as a bowel frequency of more than three times a day. They then assessed histological evidence of celiac disease based on subsequent duodenal biopsies, plus Marsh grading. In cases where patient histology was unclear, they relied on the clinical assessment of a consulting gastroenterologist. Unclear histology included minimal/mild increase in intraepithelial lymphocytes of not more than 30 per 100 enterocytes and without villous atrophy, plus mild villous blunting with no increase in intraepithelial lymphocytes. They then categorized patients as either celiac disease negative, or celiac disease positive. Patients with no histological evidence of celiac disease on duodenal biopsies or equivocal histology plus overall clinical impression of celiac disease absence were categorized as celiac disease negative. Patients with histological evidence of celiac disease on duodenal biopsies or equivocal histology plus overall clinical impression of celiac disease presence were categorized as celiac disease positive. To measure IgA anti-tTGA antibody the team used a commercially available enzyme linked immunosorbent assay called Aeskulisa, manufactured by Aesku Diagnostics GmbH in Wendelsheim, Germany. To detect IgA anti-EMA with the standard immunofluorescent method, they used commercial slides of monkey oesophagus sections (Euroimmun, Euroimmun AG, Lübeck, Germany). They used conjugated sheep antihuman IgA as a secondary antibody, relying on a test manufactured by Instrumentation Laboratory UK Ltd., in Warrington, UK. Overall, the team categorized 113 patients (90.4%) as celiac disease negative. Of these, 102 patients had no histological features of celiac disease, while 11 patients had unclear histology plus an overall clinical impression of not having celiac disease. They categorized twelve patients (9.6%) as celiac disease positive. Of these, 10 patients had positive histology, and two patients had unclear histology plus an overall clinical impression of having celiac disease. Of those with positive histology, 17% were Marsh grade I, 8% were Marsh grade II, 33% were Marsh grade IIIa, 17% were Marsh grade IIIb and 25% were Marsh grade IIIc. Those with celiac disease were more likely to be older and to have a higher tTGA level. The groups showed no difference in any clinical parameter. Source: Frontline Gastroenterol. 2012;3(2):81-83.
  6. Hello everyone and btw please excuse me if my english is bad ): ! the idea of having celiac has been around my head since a significant time ago, i have anti thyroid autoantibodies and a borderline t4 and tsh, dry eye, multiple joint and muscle pain, acid reflux, stomach pain, diarrhea alternated with constipation, floating and weird stoles, psoriasis, nausea, dizziness, vitamin A deficit, vitamin b12 decifit, vitamin D deficit, random bleeding from lady parts, not related to ovulation, menstruation or anything, im tired all the time and im done feeling like crap everyday, my medic of course suspect celiac so i have a blood work done, it come back negative, i also had what i think was herpetiform dermatitis, sadly i didn't know about it at that time and as i have psoriasis gutata too and it looks kind of similar i think it was the same thing at the beginning, they were blisters that itch a lot on my knees, i should have gone to the doctor but now its too late since they are gone so i cant, the thing is, i was gluten free almost 100% for a very long time, it was kind of intuitive, i didn't think i had celiac at that point, but notice a significant difference eating that way so i "follow my instinct", the dermatitis and psoriasis disappear, later i started consuming gluten once in a while but not in a regular way, maybe one week i eat something, the next week anything, etc etc (i had symptoms this way and thats why i went to the doctor), i was told by my doctor to eat gluten for at least two weeks before the blood work, and i was so bad that i had to go to the urgency's, a lot of stomach pain and constipation, fever, diarrhea, it was hell, so i eat as much as i can but maybe not as regular as i should, Now that i see that all antibodies are completely normal i feel lost and crazy, should i do the biopsy anyway? i dont know any other way to explain the multiple vitamin deficit since i eat really healthy, could this have to be with the fact that i was gluten free for a long time? (the absence of antibodies) even tho i consume gluten once in a while at those times? every antibody come back negative and i had a total IGA and im not deficient. I dont know what to think, i was on my period when blood work was done and i also had flu like syntoms, my immune system was hitting rock bottom as always on these days, maybe that's the reason? idk what to think really... any advice or thought
  7. Hi All- new here and new to all of this. Quick info: I have hashimoto's disease and was hoping that trying gluten free might help with some ongoing symptoms that have not been relieved by levothyroxine and liothyronine (synthroid and cytomel). Well- one my main symptoms has been weight gain and an inability to lose weight and in the past couple of months since reducing gluten I've lost 30 pounds without really any other change to my diet/exercise. In the past month I've done my best to remove it completely (using apps etc. to scan my food) but since I am new at it there have of course been some misses on things that it is in and times that I've fudged it thinking it wouldn't matter. Additionally, I've always struggled with GI issues on and off. There have been times where I've seen the GI doctor for frequent diarrhea and mid-stomach pain without anything being resolved in terms of diagnosis, and then periods where I haven't had as much issue with these things. Since going gluten free I was feeling things were more regular, but having some out of town visitors and eating out more led to less meticulousness on my part. I was still getting gluten free items but not checking all the time if say fries were not coated in something, etc. and noticing more stomach upset and sometimes a cough/sneezing/nose congestion- which has also been an issue for me (I don't know if this is typically something that goes with Celiac or something else entirely, but something I've noticed when I eat often nonetheless). Anyway, I saw my regular doctor and mentioned this all to her and she did the bloodwork for Celiac, which came back negative. I've read that if one has been on a gluten free diet for 2+ weeks it can lead to inaccurate test results. I am wondering if anyone has had this experience and is something I should continue to pursue? Or if considering the information I've laid it is probably the case that Celiac is not to blame for whatever is going on and maybe I just have some kind of intolerance related to my hashimoto's as I'd originally suspected. Either way I surely have seen a benefit from eliminating gluten and my body has an issue with it, I would just prefer to know if it may still be Celiac that is causing GI and other gluten related problems for me! I've kind of gotten to that point with things that I'm worn down from pressing doctors about my thyroid and getting nowhere, don't want to do it with this one too if it's not going to be worth it. Thanks in advance!
  8. Hello all this morning I finally got a call back from my doctors office after having an endoscopy a couple of months ago. My endoscopy showed flattened villi, so I started on the gluten free diet. I've been feeling a bit better, bowel movements not so loose and frequent, acid reflux gone, more energy and months of horrible brain fog cleared! I was sure the doctor was ringing to confirm diagnosis, but instead the call was from reception ensuring me my results are all clear. Ive never had the blood tests done, and don't know of any history of celiac in my family. my question is, what else can cause flat villi? I'm worried and do not want to just dismiss these findings. Is it possible this could still be celiac? thanks in advance!!
  9. my personal symptoms above. Did another blood test and results came negative again, (gene test also negative). Found something that's interesting, useful for those that receive negative results and still convinced they have celiac or have some sort of food sensitivity(like i was). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2834720/ more links: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4479362/ http://bit.ly/1UlUTpq Kinda solved it for me, cause i personally went through all types of abuse as a child, had symptoms listed above, got better now, hardly any symptoms. As a note my siblings went through similar situations to a lesser degree, and they both have GI issues growing up. Feel free to ask, and inform people about this
  10. I had a celiac blood test around may 2015. I'm 20, male. AGA - 35 range 0-20 TTG IgA - 5 range 0-20 I believe total IgA was normal. I have been gluten free, avoiding gluten best I could for about 2 weeks before this. On june 2015, did a biopsy, results said no signs of villous atrophy, doctor convinced I don't have it. Been gluten free for about a month before this, doctor only said to eat a 'normal' diet beforehand. I know that this could yield false negative results, but I don't think the amount of time is enough to hide the damage? Had symptoms since I was 4-5 years old, very skinny , pale, constipation, diarrhea, inconsistent nausea (from eating wheat products, soy sauce), migraines, stomachaches, night terrors, sleepwalking. Symptoms were most evident till around 10 years of age. During my teens, the symptoms seemingly start to fade, rarely nauseated, random bouts of diarrhea 1-2 times a month or so. Been gluten free for up to 8 months now, decided to start eating gluten again just to see how I would feel/ for retesting. Almost on day 2, no noticeable symptoms. Ate gluten heavy for a month, a year before, breads, pasta 2-3 times a day, lost over 3-4 kg, started feeling overly lethargic during the day/after eating gluten. Sharp stomach pains and mild diarrhea once or twice. I'm quite certain it's celiac, but if its not, and after reading about how non celiac gluten sensitivity might not exist,i don't really know what to think anymore. Any opinions/ similar experiences would be appreciated.
  11. So this is going to be kind of long, and i totally understand if you guys don't want to read it. I'm not sure whether I'm being paranoid, or I really might have celiac. To start from the very beginning, I took accutane (roaccutane) about a year and a half ago for one whole year (only 20 mg a day which is a small dosage), at first I did experience its annoying symptoms such as back pain and dry eyes and bloody nose. 5 months in, I decided to become vegan. it's been almost a year since I turned vegan, meaning no dairy, no eggs, and no meat or poultry or fish for me. Now I did this at first because its health benefits seemed too surreal, along with my growing love and respect for animals. I was 16 then. (I though it might naturally protect my skin from acne if it tried to come back after the treatment) So I followed all the good advice, eat plentiful, don't restrict calories, try to eat from various food groups (legumes,grains,vegetables,fruits), and so on. At first, I was feeling great, I was getting lighter (I was already thin, but I felt physically lighter and more energetic), my mood slightly improved, and I naturally stopped craving junk food. Two months ago, though, I decided to get my blood tested. ( I have done so before in order to take accutane, but never checked my vitamin levels or anything like that) Results came back as following: I had b12 deficiency (my levels were 139 whereas the minimum rage was a little bit more than 210 If I remember correctly) I had Iron deficiency (most likely), my ferritin levels were really low, mine were 5 whereas the minimum was about 12 my calcium levels were normal my protein levels were normal * I didn't get my zinc, magnesium, or vitamin D levels checked out (didn't think they were important) So my parents freaked out, and so did I I thought it can't be my vegan diet, since I was eating tons of legumes and spinach daily. (I never used to eat vegetables or leafy greens in big quantities before). And I was taking B complex, which said it had the recommended daily amount of b12. (might I mention that my mom is b12 deficient and also Iron deficient, but her levels were higher than mine for both) I was confused as hell. Then I did my research, and I tried to get in as much Iron as I could ( I even started taking a supplement). Two weeks after I had my blood tested, my nails started getting weird; small vertical ridges started showing on all of my fingernails ( which I hadn't had before), and then week after week, weirder things started to happen: horizontal bumps started to show, and my nail tips started to curved downward slightly. I was freaking out, because I had almost perfectly healthy nails before, and none of that had ever happened to me! Weird part is, they're still growing at a normal rate, but they still have bumps and ridges. And then I started noticing changes in my stools (excuse the gross stuff), I was going to the bathroom more often, every morning I would have to go the bathroom maybe 3 or 4 times, and my stools were very loose ( still are ). A couple of times a week, they would be very pale in color, and other times they would contain small dots of red (maybe blood), sometimes they would be green. My hair also started to fall out more often that it used to. So two or three weeks ago, I had my blood tested for celiac, because I felt like it was the only explanation for my problem. I only had one test done though, only the IgA. Turns out it was negative. Then I read somewhere on this forum that sometimes the amount of IgA serum in the blood might be small, and so the test might not be accurate. I'm not sure what to do, my parents don't believe me when I tell them, and when I do complain about my symptoms, they blame me for being a vegan. Could you guys give me some advice please? Do you think it might be Celiac? And has any one experienced similar symptoms after taking Accutane or becoming vegan?
  12. My 3 year old has been gluten free since before birth, since I am gluten free. My sister is diagnose celiac, I was tested but it was negative, I carry the gene, and since I tried for months to find any other cause for my fatigue without result, I went gluten free to try it and felt a million times better. So, when I was breastfeeding her, I accidentally ate something with gluten, and she got diarreaha. Once she got to table food, she tried some gluten, and got diarreaha. The pediatrician and I ageed to avoid more gluten. This summer, we did a gluten challenge with her, I want some kind of diagnosis for upcoming public preschool and kinder,etc. She had rotating constipation and diarreaha all summer, and the poor thing would say 'My tummy is angry' when she had to poop. At our visit, the gastro dr sounded optimistic my child would have some kind of result, given family history and symptoms. Well, her tests came back in 'normal range' And I pushed for the IgG and IgA to cover all the bases. So, what next? Dr said biopsy isn't necessary since results are normal. I want my child to go back to gluten free becuase she had zero bowel issues then. My pediatrician is ok with using a 'non-celiac gluten sensativity' on any school papers I need, but that diagnosis doesn't have and legal/federal support. I guess I should just hope for supportive teachers and be that really annoying parent? (They eat a very gluten-full breakfast and snack in their classrooms everyday in our public schools, I just worry about busy teachers not having time to clean tables and stuff, which would be mandated by a 504 if she qualified)
  13. Hello, I am 55 female diagnosed with lichen sclerosus which is also on my legs and mid section. Since that diagnosis I have also been diagnosed by my doctor and her physician's assistant as having gluten rash and was told to NEVER eat gluten again. My dermatologist that I go to for the lichen sclerosus also told me to never eat it again. Three years ago I had an endoscopy and blood test for Celiac which came back negative. my rashes that aren't the lichen sclerosus are indeed blisters that itch on both sides of body, mostly on shoulders and upper arms, back of scalp/hairline and mid/lower back, sometimes fingers and here and there. They do scab over quickly, are tiny and itch mostly before actually becoming blisters and then scar a light brown color. Is it possible I have dermatitis herpetiformis when three years ago my bloodwork *iga* was negative and my endoscopy was normal. Unlike most people, I am hoping to be diagnosed wrong....whereas it seems everybody else is wanting and looking for a diagnosis of celiac/dermatitis herpetiformis and their doctors won't give it. Thank-you!
  14. I was diagnosed with Coeliac disease at age 2 (biopsy) and have been on the diet all my life. (Now aged 45) This is the fist time properly reading anything about it coming to this website. I have always understood Coeliac disease to mean - eat wheat and you throw up, have diarrhoea and stomach pains. When I moved from milk to gluten aged 6 months I started being sick and lost weight. Once I was old enough to have freedom to roam a bit, aged 11ish I cheated when it suited me on a snack here or there. And through my adult life when I’ve been caught out on the road I’ll eat a slice of pizza, breaded chicken or other junk food to keep me going when there’s no other option. Stock cubes, beer, soy sauce etc. I’ve always treated as ok but know they have traces. I have stayed on the diet, with the exceptions above admittedly because way back I was told even without any symptoms you have to stay on the diet as otherwise ‘it’s bad for you’. And so I have, but thinking it has never affected me past the age of about 8 years old. Reading this site though has shown me a whole list of things I would never have though had anything to do with being a coeliac and look more like a list of things that happen to people in general. All very vague and nebulous symptoms. I thought Coeliac disease did only one thing - destroy villi in the small intestine thus making it impossible to absorb nutrients. This causes rejection of food and malnutrition. Anyway, the reason I am here: I recently saw a gastroenterologist as I had a stomach ache for a couple of weeks and was worried. I had various test that thankfully showed a healthy digestive system along with healthy villi. I then asked him about my condition saying if I eat gluten I don’t notice any symptoms. People say 'you have to stay gluten free for life’ etc.etc. What’s the deal? His view was - Well, maybe you don’t have Coeliac disease and we could check to confirm it. He has recommended the following action: Get blood test now to confirm antibody is negative. Start 5 weeks of eating gluten - 100g / day of wheat. Test again for the antibodies If still negative get a biopsy to be sure. If negative then you are not a coeliac. This seems to go against what I’ve read here. I am surprised that being Coeliac is a vague thing these days. As an infant I would have died presumably if it was ignored but it seems people wander around for years with it not realising they have it. Very different to what I understood it to be. So perhaps I really do still have it. So until today I was thinking I was about to walk away from the diet clear of the disease. I think taking the gluten challenge and tests may be good for me though. If it is positive then it will give me the cue to stick properly to the diet.
  15. Since I was little I would break out in severe eczema and for years we went to doctors and specialists who said the eczema would pass when I was a teenager. Unfortunately I'm 20 and I still break out severely. About three years ago I was rushed to emergency at lunchtime because I was crippled with pain, the emergency room doctor asked what I had for lunch and when I replied "All I've had is a roll" he suggested that I may be allergic to gluten. This isn't the first time I've felt these pain, mostly at home or they haven't been as severe but it's been happening for years and most doctors thought I was faking it to get out of school. We went to a doctor who assured my mother and I she would get to the bottom of this problem, that she would make sure she found out what was causing me so much pain. She had me go for a genetic blood test but when it came back negative she said "You know Claire, you can't fake these kind of things. You have to go to school.", and I wanted to cry on the ground. I couldn't believe how easily she gave up and thought I was faking this pain. My mother who was furious dragged me to several doctors who practically said the same thing. I confided in my history teacher how distressed I was, he was a celiac, who told me that the genetic test can come up negative. Mum dragged me to a specialist who said that the only way I can truly be sure is if I get an endoscopy which I was all for until he told me I had to eat gluten for 6 weeks. I'll note here that between being told I was probably allergic to gluten and finally going to the specialist I had cut all gluten from my diet for around 4 months and I was no longer breaking out in eczema or having such bad pains all the time. The thought of eating gluten for 6 weeks makes me cry, it's absolutely terrifying and a lot of my friends don't understand the pain I feel after eating even a regular cracker or taking a bite from bread. I was in my last year of High School and I couldn't be suffering so badly when I needed to study. The second I left I got a job in the city and I've been working my butt off for a year and a half. 've finally left the job due to a downfall in management and I'm feeling like maybe I should get the endoscopy as my intolerance is worse. I break out from using makeup or dishwashing liquid with gluten in it. Because it doesn't say I'm a celiac in my files, a lot of doctors don't take me seriously and prescribe me medication which I've been glutened from even after I told them I'm allergic. I also have no clue if my insides are healthy. I really need advice here, I'm so scared about what I should do. Plus I need to look for a new job but I'm currently a giant ball of eczema because mum made scones and I accidentally inhaled some regular flour. I'm sorry this was so long but I'm terrified and would really appreciate some advice.
  16. Celiac.com 06/27/2013 - Patients with villous atrophy and negative celiac disease serologies pose a diagnostic and therapeutic dilemma. When doctors are unable to determine what is causing villous atrophy in a patient without celiac disease, they usually classify it as a case of "unclassified sprue." However, doctors currently know very little about the best way to treat and manage cases of unclassified sprue. To get a better picture of this dilemma, a team of researchers recently examined the connections between villous atrophy and negative celiac serology. The research team included M. Degaetani, C.A. Tennyson, B. Lebwohl, S.K. Lewis, H. Abu Daya, C. Arguelles-Grande, G. Bhagat G, and P.H. Green. They are variously affiliated with the Celiac Disease Center, and the Department of Medicine at Columbia University College of Physicians and Surgeons at Columbia University Medical Center in New York, USA. For their study, the team looked at adult patients with biopsy-proven villous atrophy and negative celiac serology, evaluated at our tertiary referral center over a 10-year period. They noted test results for HLA DQ2/8 alleles, antienterocyte antibodies, giardia stool antigen, bacterial overgrowth, total serum immunoglobulins, and HIV. They also recorded treatment, response, and repeat-biopsy findings for each patient. They found that most of the 72 cases were classified as seronegative celiac disease, medication-related villous atrophy, and unclassified sprue. The majority of patients diagnosed with unclassified sprue reported symptomatic improvement with immunosuppressive therapy. Some patients diagnosed with unclassified sprue were found to have villous atrophy associated with the use of olmesartan. The team encourages further examination of the role of medications in the development of villous atrophy, along with the optimal dose and length of immunosuppression for patients with unclassified sprue. Source: Am J Gastroenterol. 2013 May;108(5):647-53. doi: 10.1038/ajg.2013.45.
  17. Celiac.com 11/05/2012 - Over the last 40 years, studies have shown higher rates of menstrual abnormalities and pregnancy complications among women with celiac disease. However, the data from these studies have been inconsistent, and inconclusive regarding the actual effects of celiac disease on female fertility. To get a better picture of the relationship between celiac disease and female fertility and pregnancy, researchers recently conducted a more comprehensive study. The research team was led by Stephanie M. Moleski, MD, of Thomas Jefferson University Hospitals in Philadelphia. Dr. Moleski presented an abstract of the study data at the American College of Gastroenterology Annual Meeting 2012. In the abstract, she points out that women with biopsy-proven celiac disease had significantly higher rates of fertility and pregnancy complications and gave birth to less children than those without the disease. Because it is an abstract, the study data and conclusions should be regarded as preliminary until they appear in a peer-reviewed journal, where they can be given a fuller context and be more widely scrutinized. For their study, Dr. Moleski and her colleagues recruited patients treated for celiac disease at Thomas Jefferson University Hospitals, as well as members of the National Foundation for Celiac Awareness and the Gluten Intolerance Group, to respond in an anonymous Internet-based survey about fertility and pregnancy. Women without celiac disease also completed the survey and served as a control group. The survey included questions about celiac diagnosis and history, menstrual history, fertility, spontaneous abortions, and pregnancy outcomes. Approximately 1,000 women who completed the survey. Of those, 473 had physician-diagnosed celiac disease, while 298 women had the been confirmed for celiac via small-bowel biopsy. The researchers used the group with biopsy-proven disease to compare against 560 women without celiac disease. The data showed that 41.2% of women with celiac disease had increased difficulty conceiving compared with 36.5% of control subjects (P=0.03). Women with celiac disease also had more consultations with fertility specialists and higher rates of spontaneous abortion, preterm delivery, and cesarean section, compared with control subjects. Additionally, women with celiac disease were shown to have a shorter duration of fertility, to have a later onset of menarche and be younger when they experienced menopause, said Dr. Moleski. The data also revealed important differences between women with and without celiac disease. In all, 22.4% of women with celiac disease had consulted with fertility specialists, compared with 19% of those without (P=0.04). Also, 43.3% of celiacs had a history of spontaneous abortion, compared with 36.6% of non-celiacs (P=0.02). Compared with the control group of non-celiacs, women with celiac disease also had higher rates of cesarean delivery, 26.4% versus 23.8% of non-celiac women. Lastly, rates of preterm delivery were 23.2% for celiac women, and 14% for those without celiac disease (P=0.007), while the group with celiac disease was was also slightly older at the onset of their first period (12.7 versus 12.4 years, P=0.01). Among women reporting a history of spontaneous abortion, more than 80% of miscarriages occurred prior to diagnosis of celiac disease, said Dr. Moleski. She concluded that the retrospective analysis done by her team shows a clear relationship between celiac disease, fertility, and pregnancy outcomes, and suggests that the results demonstrate "a need for increased awareness of this association among patients and physicians." Sources: Medpagetoday.com American College of Gastroenterology, 2012; Moleski SM, et al "Infertility and pregnancy outcomes in celiac disease" ACG 2012; Abstract 15.
  18. Celiac.com 04/20/2010 - A team of researchers recently set out to determine whether new serology assays can detect gluten sensitivity among enteropathy patients seronegative for anti–tissue transglutaminase. Emilia Sugai, Hui Jer Hwang, Horacio Vázquez, Edgardo Smecuol, Sonia Niveloni, Roberto Mazure, Eduardo Mauriño, Pascale Aeschlimann, Walter Binder, Daniel Aeschlimann and Julio C. Bai comprised the research team. They are variously affiliated with the Small Bowel Section of the Department of Medicine at C. Bonorino Udaondo Gastroenterology Hospital in Buenos Aires, Argentina, the Matrix Biology and Tissue Repair Research Unit at the Cardiff University School of Dentistry in Cardiff, UK, and with INOVA Diagnostics, Inc., of San Diego, California. Some patients with celiac disease may not show a normal positive reaction to the test most commonly used for IgA anti–tissue transglutaminase (anti-tTG) antibodies. The research team set out to determine the usefulness of newer assays incorporating synthetic deamidated gliadin-related peptides (DGPs), or other TG isoenzymes as antigen, for detecting gluten sensitivity in IgA anti-tTG–seronegative patients. The team tested blood samples drawn at diagnosis from 12 anti-tTG–seronegative patients with a celiac-like enteropathy, from 26 patients with skin biopsy–proven dermatitis herpetiformis (DH) and, lastly, from 26 patients with IgA anti-tTG–positive celiac disease. All patients showed typical levels of total IgA. On each patient, the team conducted intestinal biopsy and serum testing for detection of IgA and IgG isotypes of both anti-DGP and anti-tTG in a single assay (tTG/DGP Screen; INOVA Diagnostics). They also tested each patient for simultaneous detection of both IgA and IgG anti-DGP antibody isotypes (DGP Dual; INOVA Diagnostics). Lastly, they tested each patient for the detection of antibodies to transglutaminase 3 (TG3) or transglutaminase 6 (TG6). All patients who showed positive anti-tTG results also tested positive in anti-DGP assays. The tTG/DGP Screen caught six of the 19 anti-tTG seronegatives (31.6%), while anti-DGP Dual produced caught five of these cases (26.3%). Whereas both assays detected 2 anti-tTG–negative DH patients with partial villous atrophy, they were positive in only 2 of the 5 cases with no histologically discernible mucosal damage. Testing for antibodies to TG3 and TG6 caught seven of the 19 anti-tTG–negative patients (36.8%), five of whom also tested positive for anti-DGP. From these results, the team concludes that using tTG/DGP Screen, or anti-DGP Dual, to detect anti-DGP improves diagnostic sensitivity of gluten sensitive patients with non–IgA- deficiency, or anti-tTG–seronegativity, and celiac-like enteropathy. The same enhancement is also achieved by detecting antibodies to other TG isoenzymes. Source: Clinical Chemistry 56: 661-665, 2010.
  19. Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: The three serological tests that are used for diagnosing celiac disease are: Anti-endomysial antibody (EMA) Anti-reticulin antibody (ARA) Anti-gliadin antibody (AGA) Each of these three tests provide a certain degree of reliability for diagnosing celiac disease. Of these, endomysial antibody is the most specific test. The following table is taken from our studies (Lerner, Kumar, Iancu, Immunological diagnosis of childhood coeliac disease: comparison between antigliadin, antireticulin and antiendomysial antibodies). % of Sensitivity % of Specificity Predictive Value % Pos Predictive Value % Neg EMA 97% 98% 97% 98% ARA 65% 100% 100% 72% IgG AGA 88% 92% 88% 92% IgA AGA 52% 94% 87% 74% The following definitions related to sensitivity, specificity, positive and negative predictive values may help: Sensitivity is the probability of a positive test result in a patient with disease. Specificity is the probability of negative test result in a patient without disease. Positive predictive value is the probability of disease in a patient with positive test result. Negative predictive value is the probability of no disease in a patient with negative test result. Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The summary below shows the results of the main serological tests based on several publications including 388 patients with celiac disease, and 771 healthy subjects. SENSITIVITY- the proportion of subjects with the disease who have a positive test. It indicates how good a test is at identifying the diseased: Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA Average 78% 79% 97% Range 46-100% 57-94% 89-100% SPECIFICITY- the proportion of subjects without the disease who have a negative test. It indicates how good a test is at identifying the non-diseased: Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA Average 92% 84% 98.5% Range 84-100% 52-98% 97-100% POSITIVE PREDICTIVE VALUE- the probability that a person with positive results actually has the disease: Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA Average 72% 57% 92% Range 45-100% 42-76% 91-94% NEGATIVE PREDICTIVE VALUE- the probability that a person with negative results does not have the disease: Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA Average 94% 94% 100% Range 89-100% 83-99% 100% References: McMillan SA, Haughton DJ, Biggart JD, Edgar JD, Porter KG, McNeill TA. Predictive value for coeliac disease of antibodies to gliadin, endomysium, and jejunum in patients attending for jejunal biopsy. Brit Med J 1991;303:1163-1165 Ferreira M, Lloyd Davies S, Butler M, Scott D, Clark M, Kumar P. Endomysial antibody: is it the best screening test for coeliac disease? Gut 1992;33:1633-1637. Khoshoo V, Bhan MK, Puri S, Jain R, Jayashree S, Bhatnagar S, Kumar R, Stintzing G. Serum antigliadin antibody profile in childhood protracted diarrhea due to coeliac disease and other causes in a developing country. Scand J Gastroenterol 1989;24:1212-1216. Chan KN, Phillips AD, Mirakian R, Walker-Smith JA. Endomysial antibody screening in children. J Pediatr Gastroenterol Nutr 1994;18:316-320. Bode S, Weile B, Krasilnikoff PA, Gdmand-Hyer E. The diagnostic value of the gliadin antibody testing celiac disease in children: a prospective study. J Pediatr Gastroenterol Nutr 1993;17:260-264. Calabuig M, Torregosa R, Polo P, Tom s C, Alvarez V, Garcia-Vila A, Brines J, Vilar P, Farr C, Varea V. Serological markers and celiac disease: a new diagnostic approach ? J Pediatr Gastroenterol Nutr 1990;10:435-442.
  20. Dig Dis Sci. 2004 Apr;49(4):546-50 Celiac.com 08/27/2004 – Dr. Peter Green and colleagues at the Department of Medicine, Columbia University College of Physicians and Surgeons, New York, New York, conducted a study designed to determine the sensitivity of the various serological tests used to diagnose celiac disease. To do this they looked at 115 adults with biopsy-proven celiac disease who fulfilled strict criteria which included serological testing at the time of their diagnosis, and a positive response to a gluten-free diet. Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy. Serological results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms. All patients who were positive for anti-tissue transglutaminase had total villous atrophy. The researchers conclude: Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature.
  21. Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: If the test is negative and there is a strong suspicion of celiac disease, it must be repeated after several weeks (3-4 weeks), especially after a high gluten intake. We did a study of two cases with DH who were serologically negative. However, a gluten challenge 1g/Kg body wt/day resulted in positive serology; the results became normal on a gluten free diet. If you are a relative of a celiac disease patient and are on a regular diet and the serology performed by an experienced laboratory is negative then there may not be any need for retesting until and unless clinically justified. Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: There is no rule for it. If a family member with previous negative tests experiences any gastrointestinal symptoms associated with celiac disease, he/she should undergo serological testing as soon as possible. It is well known that up to 15% of the family members of a patient with celiac disease may have the asymptomatic (latent or silent) form of celiac disease, although they have positive serological tests and have the pathological changes in the upper part of the small intestine. It is also evident that there are at least three developmental stages of mucosal lesions (Marsh MN. Gastroenterology 1992;102:330-354) and celiac disease may manifest at each period of life. That is why we recommend a repeat test every 2-3 years in first degree relatives of celiac patients.