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Found 118 results

  1. How long did it take you to get your blood test results? How were you notified of the results (letter, phone call etc.)?
  2. Hello I made this account tonight because I am need of help by those with more experience than me. Basically since June I've been feeling horrible every morning throughout the entire day. My main symptoms were extreme nausea (no vomiting), stomach pain, constipation, and diarrhea. I was in and out of the doctors doing blood work and taking medicines for other things like ibs and gastritis until we started to think about a month and a half later that it could be celiac or a gluten insensitivity. My typical day was wake up around 9 am, feel nauseous, eat little while drinking water, and feel okay enough to fall asleep around 3 pm for a few hours and wake up feeling better with almost no nausea at all. After seeing a Gastroenterologist and having extensive blood work done, everything came back looking normal (beginning of august). We kept up with gluten free diet while taking protonix and eventually things started to turn around. I was waking up less nauseous and it would only last a few hours or a couple compared to all day. It ended up getting better to the point where i woke up later than 8 or 9 am with finally no nausea or hunger pains and i would be able to eat a fair amount throughout the day and not have any symptoms besides occasional bloating. Something happened last thursday where I woke up with nausea and it lasted a couple hours. It has been the same thing since then and even today was one of my worst days with eating little and nausea being present after eating any meal no matter how small. I never use to get nausea at night and for the past two days i have had it for a couple hours before bed. I canceled my endoscopy that was scheduled for the 27th this monday about a week prior to that date because i had felt so much better but now i regret it. We think ive been glutened but i keep a food journal and i havent been eating anything different than before i had made great progress. Does anyone else have this problem? Does this sound like ive been glutened? Something feels different and although i havent been officially diagnosed celiacs I just dont understand why id be feeling this way after making such great progress. This all comes when im starting up school and an internship and is very inconvenient and depressing. I have my own utensils and cookware that I use and I am extra paranoid and safe about making sure my areas in the kitchen are gluten free and clean. Does anyone have any tips or knowledge about this? Should I call up my doctor again? The nausea was so bad this summer i couldnt work and couldnt do anything besides pace around the house while sipping water with the air conditioner running. Im really hoping i can go back to feeling the way i felt just a week ago so that i can start up my internship and make it to school everyday. I appreciate any and all feedback!
  3. 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!
  4. Hi all, I'm new to the forum so I'm really hoping someone will be able to help. I've been having digestive issues for the past 2 years and have lost nearly 4 stone in weight. All of my symptoms suggest celiac disease, I not only have digestive issues, bloating ect but my upper arms are covered in a rash, obviously the weight loss and then I'm also constantly anaemia and I now have low vitamin D levels along with depresssion, anxiety, constant headaches, tiredness, stomach pain ect. I know these symptoms could suggest a number of issues but I have noticed once I've stopped eating gluten products my symptoms seem to at least lessen. I've asked the doctor what he suggests and he does think it is likely but i'm struggling to be put forward for further testing. I'va had countless generic blood tests but obviously this isn't enough to diagnose if I have it or not. I'm honestly losing my mind with not only feeling so ill but also not knowing what exactly is wrong with me. Should I just try a gluten free diet and see if my symptoms continue to improve or what?
  5. Hello all, So, long story short, in 2011 I started getting really really sick, with no discernible cause. Violent vomiting daily, rapid weight gain (40 pounds in one month) unbelievable exhaustion, depression, social anxiety to the point of not being able to leave the house, hives, acne, rashes, brain fog, and my LEAST favorite, the all-over bruised body feeling you get when you have the flu (that horrible bone deep aching that makes it uncomfortable to move at all, and any clothing touching you hurts.) Oh, and monstrous swelling of my face and stomach. I wound up figuring out through elimination of certain things in my diet that what was doing it was gluten and dairy. So, over the years I've cut them out (at first, after I cut them out, I was still getting horrendously sick, just less often and it took me too long to realize CROSS CONTAMINATION WAS A THING) So fast forward to now, I'm able to function like a human again by being INCREDIBLY strict with my diet and making almost all of my food myself and NEVER taking any chances with anything that was "processed in the same facility with..." etc etc I've also recently started going back to school, which means I have to be EXTRA careful, or I won't be able to attend classes or study because my brain, and my body just don't function when I've been exposed. However, I've always been a do it yourself girl, so after having endoscopies and colonoscopies years ago, and having a doctor tell me I had "acid reflux" (way to diagnose the symptom, not the cause, ya jerk) and having no doctors know why I was getting so sick, and eventually figuring it out myself, I never was tested for Celiac's Disease. So obviously, I'm scarred for life, and terrified to death of gluten and I was wondering; does anyone know of some way that I could be tested for it WITHOUT exposing myself to it? Thank you so much in advance
  6. Hi All! I just found out I have the celiac gene. My brother has it too; he was diagnosed with celiac. My sister also has the gene but she was diagnosed NCGS. I have tried twice to do the gluten challenge so I can get proper blood work and this last time (last Friday) I got so sick I missed two days of work this week. I am just today feeling like myself again. I only stopped eating gluten about two months ago (except for the two times I ate gluten in the last two weeks). Do you think my blood work would still come back positive or is it a waste to test at this point without doing the gluten challenge? Or maybe the challenge gets easier the longer you do it? I would like to get a proper diagnosis but I can't lose my job. Thanks in advance for any advice.
  7. Celiac.com 04/24/2008 - Genetic tests for celiac disease and gluten sensitivity are readily available. Testing can be performed on either blood and mouth swab samples. If the testing is performed by certain laboratories not only will you have quite an accurate prediction of your risk of Celiac disease but also you may have information about the statistical probability that your children will inherit the risk, your likelihood of more severe Celiac disease, whether one or both of your parents had the risk gene, and for some laboratories you may determine your risk of gluten sensitivity without Celiac disease. The absence of any portion of the high-risk genetic patterns DQ2 and DQ8 nearly excludes the possibility of celiac disease with an approximate accuracy of 99.9%. However, there is a big caveat about relying on "negative celiac genetic testing". To definitively declare you have negative celiac genetic tests requires that the laboratory test for and report the presence or absence of the entire HLA DQ genetic pattern, including both alpha and beta subunits. The DQ genetic patterns DQ2 and DQ8 have two subunits but some laboratories only test for the beta subunit. This DQ typing is complicated and difficult to understand even by physicians and scientists. I have written an updated detailed review that appears in the Spring 2008 issue of Scott-Free newsletter published by celiac.com. Data collected by Dr. Ken Fine of Enterolab has supported the well-known fact that the absence of DQ2 and DQ8 does not exclude the risk of being gluten intolerance or sensitive though it now generally believed that one or both of those genetic white blood cell patterns are required to develop the autoimmune disorder known as Celiac disease or Celiac Sprue. However, there is a new study that reports that being negative for DQ2 and DQ8 does not completely exclude the possibility of celiac disease, especially in men. Previous studies have well documented blood test negative Celiac Sprue, also more common in elderly men with long-standing severe disease. Since DQ2 or DQ8 is almost universally present with the specific blood tests tissue transglutaminase and anti-endomysial antibodies are present it is not surprising that individuals without DQ2 or DQ8 that are negative for these two blood tests are being reported that meet criteria for Celiac disease. These new studies are also providing further information that the genetics of Celiac is gender specific. If you are a man, your risk of celiac disease may be higher than a woman if you don't have the classic genetic patterns. Again, in this situation your blood tests may be negative. If you are a woman, the risk for Celiac disease is generally higher than a man, especially if you have received the at risk gene from your father instead of your mother. Celiac is arguably the most common autoimmune disease. It is very common. It is easily treated. It affects 1/100 people worldwide. However, most people with celiac disease (~90%) are unaware, undiagnosed or misdiagnosed. Most adults finally diagnosed with celiac disease have suffered at least 10-11 years and have seen more than 3 or more doctors. Genetic testing is not only available but can be extremely helpful in determining your risk of developing Celiac disease, how severe it may be and the risk of your family members. Don't be one of those whose diagnosis is missed or needlessly delayed for over a decade. Get tested! Learn about the genetic tests for Celiac disease and if necessary educate your doctor about this testing. Here are ten facts you should know and remember about Celiac genetic testing. Genetic testing can help determine your risk as well as your children's risk. Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results. Genetic testing is not affected by diet. You can be eating gluten or on a gluten free diet. Blood tests for celiac disease antibodies, however, need to be done while eating gluten. They can become negative within a few weeks of restricting gluten so if you are going to get the diagnostic antibody blood tests don't begin a gluten free or restricted diet before being tested. Some insurance companies do not for the Celiac genetic test and almost all who do require pre-authorization first. The following diagnostic codes are helpful when requesting insurance coverage: 579.0 (Celiac disease); V18.59 (family history of GI disease); and/or V84.89 (genetic susceptibility to disease). Some laboratories do not perform the all of the necessary components of the test to completely exclude the possible genetic risk of Celiac disease and most don't test for or report the other gluten sensitive DQ patterns. Before you accept that have a negative test you need to know if your test included both the alpha and beta subunits of HLA DQ or did they just perform the beta typing. In some rare individuals, especially some men, a negative genetic test may not exclude the possibility of celiac disease anymore than a negative blood test. Men more commonly have negative genetic tests and blood tests, especially older men with long-standing severe disease. Both the DQ type, and number of copies you have, matter when determining not only your risk but also the possible severity of celiac disease. Two copies of DQ2 carries more risk than one copy of DQ8 or only partial DQ2. Even a single copy of DQ2 alpha subunit ("half DQ2 positive") carries risk for celiac disease but most of the commonly used laboratories for Celiac genetics do not test for or report the presence of this component of the celiac genes. The absence of at risk genes DQ2 and/or DQ8 does not exclude the possibility of being gluten intolerant or sensitive. You may respond to a gluten free diet even if you don't have DQ2 or DQ8 or true autoimmune Celiac disease. You can get genetic testing without a doctor's order and the tests can be done without having blood drawn or insurance authorization if you are willing to pay between $150-400 (www.kimballgenetics.com and www.enterolab.com). Laboratories in the U.S. that are known to offer complete alpha and beta subunit genetic testing include Kimball Genetics, Prometheus, and LabCorp. Bonfils, Quest and Enterolab only test for the beta subunit portions and therefore their test can miss part of a minor alpha subunit that carries a risk of Celiac disease. A negative DQ2 and DQ8 report from these labs may not necessarily be truly negative for the risk of Celiac disease. References and Resources: HLA-DQ and Susceptibility to Celiac Disease: Evidence for Gender Differences and Parent-of-Origin Effects. Megiorni F et al. Am Journal Gastroenterol. 2008;103:997-1003. Celiac Genetics. Dr. Scot Lewey. Scott-Free, Spring 2008.
  8. I was wondering if someone can help me understand my results. I got wishy washy responses from two different doctors and I am still pretty confused. I attached an image of my results, but in case you aren't able to view it, my Gliadin IgA is high, but everything else seems to be in low and in normal range. Anyone know what this means? At the time of this test, I was on a pretty low to no-gluten diet. I'd appreciate any insight you all can provide!
  9. Celiac.com 03/13/2018 - Transglutaminase 2 (TG2) is a common intracellular and extracellular protein with multiple modes of post-translational regulation, including an allosteric disulfide bond between Cys-370–Cyss-371 that renders the enzyme inactive in the extracellular matrix. Recent studies showed that extracellular TG2 is activated, or switched on, by the redox cofactor protein thioredoxin-1 (TRX), it is unclear how TG2 is switched off. A team of researchers recently set out to answer that question. The research team includes Michael C. Yi, Arek V. Melkonian, James A. Ousey, and Chaitan Khosla. They are variously affiliated with the Departments of Chemical Engineering and Chemistry, School of Medicine, and Stanford ChEM-H at Stanford University in Stanford, California. Their team found that TG2 oxidation by small-molecule biological oxidants, including glutathione, cystine, and hydrogen peroxide, is likely not the inactivation trigger they are looking for. They found the likely trigger to be endoplasmic reticulum (ER)–resident protein 57 (ERpp57), a protein in the ER that helps proteins inside a cell to fold. ERp57 turns on TG2 from inside the cell. ERp57 also inactivates TG2, but does so from outside the cell. Exactly how Erp57 moves to the outside of the cell, is still not understood. The research team found that ERp57 co-localizes with extracellular TG2 in cultured human umbilical vein endothelial cells (HUVECs). Moreover, ERp57 oxidized TG2 with a rate constant that was 400–2000-fold higher than seen in the smmall molecule oxidants. Additionally, showed a significantly highr specificity for TG2 than those of other secreted redox proteins, including protein disulfide isomerase (PDI), ERp72, TRX, and quiescin sulfhydryl oxidase 1 (QSOX1). Lastly, siRNA-mediated ERp57 knockdown in HUVECs increased TG2-catalyzed transamidation in the extracellular environment. To the teams best knowledge, the disulfide bond switch in human TG2 is the first such reversible regulatory trigger to be controlled by two distinct proteins, ERp57 and TRX. Getting a clear picture of how this process works, including how Erp57 moves from the inside to the cell to the outside of the cell, and how to turn it on and off at will, could help to fuel new treatments for celiac disease. SOURCE: JBC.ORG
  10. Can gluten-exposure cause elevated liver enzymes during DH rash outbreak?
  11. Beginning a few months ago, I thought I was just gluten intolerant. Then I started to really question what was wrong with me. Since I was a baby, I had intolerance to dairy. They would make us drink milk at school, and they (the government, basically) told us it was essential to our health. Yet, I was always in the health room after lunch in pain. Everyone thought I was faking it because I didn't like being at school. It wasn't until I entered high school that I diagnosed myself as lactose intolerant. I never had those stomach aches, gas, etc. again as long as I didn't consume dairy. Since I was 20, I lost a lot of weight. My BMI is 19.0, but it was 18.2 when it first happened. To maintain my weight, I don't exercise, and I overeat. This is not how things are supposed to be! I miss working out! I don't like worrying about eating when I don't want to. I'm pale, I'm cold, I can't sleep because I get a pins-and-needles feeling all over my body, sometimes I'll lose feeling in a toe, I've been told I look unhealthy, or like a ghost, I have no energy anymore, my anxiety, anger, and other mood issues are through the roof. I developed borderline personality disorder (ironically, probably, and partially stems from the emotional neglect of my parents about my physical and mental health for all those years. Saying it's all in my head, etc. I actually cried 3 times today, first time in months. My mom doesn't believe anythings wrong with me. I stayed up all night interpreting my DNA results to try getting her to believe me. We've been fighting all day. She always tries to minimize my problems and calls me a bypochondriac). My hair is becoming finer and possibly even thinning. I was diagnosed with ADD, bipolar, and psychosis. At about 17, I developed acid reflux - lots of throat-related issues like clearing it a lot, and post-nasal drop. All of this happened at the same time, basically. About 1 year ago. I had a genetic test done. There are two haplogroups related to celiac, I have the HLA DQA1 version (the most common). There are 13 (I believe) SNPs related to celiac disease. I have 12. My cousin had a similar issue and did NRT. And she's never felt better. They didn't give her diagnoses but told her to watch her dairy intake. What are your thoughts? Is it safe to assume I have the disease? I want to be myself again, but I don't know how to do that unless I know what's causing the problem. And please please please don't tell me to see a doctor, because some of us can't afford it, nor can we afford putting another medical issue on our profile. Thank you!
  12. Hello everyone: I'm hoping someone can answer my questions: I was diagnosed with MS about 10 years ago. I went gluten free nine years ago after several other people with MS mentioned that going gluten free helped their symptoms. I tried it and yes, my MS symptoms improved. Fast forward to now. I was referred to an allergist for stomach issues and stool leakage. I told my neurologist I thought it was gluten exposure as it was episodic. I tested positive (skin test) for wheat and a couple of other foods. Dr suggested a celiac blood panel. Since I've been gluten free for so long, is it likely to show positive? I have had a few accidental exposures over the last year or so and they have been due to either restaurants issues (they swear it's gluten free but my stomach says otherwise) or else I failed to read the labels properly. (I'm only quibbling about the blood work as I have to pay for it 100%) Thanks.
  13. Celiac.com 01/30/2018 - Numerous clinicians have reported higher levels of celiac disease markers in their patients with psoriasis. A number of researchers believe that some psoriasis patients suffer from asymptomatic celiac disease, and a number of patients have reported symptom improvements with gluten-free diets. A team of researchers recently set out to determine the prevalence of antigliadin IgA antibodies in psoriasis vulgaris, and to assess the response of seropositive patients to a gluten-free diet. The research team included Nikolai A Kolchak, Maria K Tetarnikova, Maria S Theodoropoulou, Alexandra P Michalopoulou, and Demetrios S Theodoropoulos. They are variously affiliated with the Department of Hematology, Omsk State Medical Academy, Omsk, Russia; Dermatology Private Practice, Chelyabinsk, Russia; Department of Pharmacy, Trikala General Hospital, Trikala, Greece; Department of Philosophy and Social Studies, School of Philosophy, University of Crete, Rethymnon, Greece; and Allergy Associates of La Crosse, Onalaska, WI, USA. The team assessed the prevalence of gliadin IgA antibodies among patients with psoriasis in an urban population, along with noting the clinical effects of a strict gluten-free diet. The team recruited 97 patients with Psoriasis Area and Severity Index greater than 2.4 from a dermatology clinic. They measured gliadin IgA antibodies in all participants and in 91 control subjects. They found elevated gliadin IgA antibodies in 13 patients, and two controls. All 13 patients were placed on a strict gluten-free diet without any other modifications in their ongoing treatment of psoriasis. Psoriasis patients who do not have celiac disease or non-celiac gluten sensitivity commonly show high levels of antigliadin IgA antibody. These results show that antigliadin IgA testing can identify psoriasis patients likely to benefit from a gluten-free diet. Source: Journal of Multidisciplinary Healthcare. DOI https://doi.org/10.2147/JMDH.S122256
  14. I am in Pittsburgh and have been to multiple doctors for stomach issues. I had an endoscopy that showed "villous atrophy indicative of celiac sprue". I had IgG and IgA testing- both came back negative. I had genetic testing and the doctor says it is also negative, but the results say I am positive for: DQB1*03 DQB1*06 DQA1*01 DQA1*03 I have googled and googled with no luck. I guess I have a few questions. Can everything be negative and I still have Celiac disease? Or what else could cause the damage to my intestines? Does anyone know enough about genetics to interpret these positives? I know I shouldn't be seeking medical advice on a forum, but my doctors have been useless. Any advice is appreciated. Should I keep up the hunt for a doctor or is this a true negative? Thanks!
  15. I recently took a blood test and went over the results with my GI doctor who will be performing and endoscopy and colonoscopy on me soon. I can't remember exactly what she said, but I believe she was talking about my IGA-TTG levels. She said the normal range was under 10 but mine was 639. I think she was talking about IGA-TTG but I'm not sure. For people who have done this test what were your high levels? Thanks! Female, 16
  16. I recently found out I have the DQ8 hetero gene. Because my life was being affected so drastically, I discontinues eating gluten and have started to feel myself. about 90% of my symptoms have resolved during the past 2 weeks of eating gluten-free. Now, I need to decide whether I should continue with a gluten challenge and test for antibodies and do the endoscopy/biopsy. I am one that would be unsettled not knowing whether or not I have Celiac. Does anyone have advice on whether or not I should do a gluten challenge and do further testing to pursue a diagnosis?
  17. About 6 weeks ago I stopped eating gluten and my symptoms (mainly bloating and tummy troubles, fatigue, brain fog) disappeared. At first i thought that I didn't need to go through with testing and didn't need an official diagnosis since i was feeling so much better, so didn't bother with the dr's until this morning. (I think it would be best for my long term health to know what is really going on) I had my blood tested for a number of things including celiac disease. I mentioned to the nurse that I haven't (knowingly) eaten gluten for 6 weeks apart one occasion 2 weeks ago. I asked if this would affect the results since you have to be eating gluten to have the antibodies in your blood but she said she hadn't heard of that being a problem before. I've read that it can take months of eating gluten before enough of the antibodies build up in your blood to get a positive result, but does anyone know how quickly do they go back down again? How long will I have to eat gluten for again before the test would be accurate?
  18. Hello everyone! My son is 6 years old and he is very small. He is the lower 5% of his age group for height and weight. He will be 7 years old on November 2nd and he only weighs 41pounds. I don't think he has gained weight in 2-3 years. He is a picky eater...very picky! He does not even like ice cream. He was diagnosed with hypothyroidism, which explains his short stature. He has been on synthroid for 6 months and is doing great. I do not know if he has hashimotos as he has not been tested for that. His endocrinologist did a celiac blood panel despite no digivestive issues (only poor appetite) or family history of celiac. His labwork is the following... DUAL AG SCREEN 31 (ABNORMAL normal is 0-19) TISSUE TRANSGLUTAMINASE IGA 0 TISSUE TRANSGLUTAMINASE IGG 1 IGA IMMUNOGLOBULIN ASSAY 65 DEAMIDATED GLIADIN IGA 62 (ABNORMAL normal is 0-19) DEAMIDATED GLIADIN IGG 3 ENDOMYSIAL ANTIBODY IGA <1:10 He only had two abnormal labs. Endocrinology told us to go to GI and GI did a scope on Monday. We are still waiting on biopsy results. The GI doctor said the scope looked great visually, but biopsy will be the final answer. What do y'all think? Can someone have celiac with mostly negative blood work? How accurate is the blood Work? What are the chances of this biopsy being positive? I feel like I have been waiting a lifetime for these results. Doctor said if biopsy is negitive, we should repeat blood work in two years.
  19. Hi, I have two autoimmune disorders. I've been on medication for one of my autoimmune disorders for about 1 year and only had it under control/remission for 6 weeks out of the whole year. He's concerned that I may have celiac, have absorption issues, and thus being more sensitive to dosage. I took the Tissue Transglutaminase IgA test, not but the full panel. We want to see results before being subject to other tests. If I have celiac, I'm asymptomatic or have very mild symptoms. I have been anemic in the past (but not lately since I eat way more meat), but I don't know if they correlate. My questions are: If someone has another autoimmune disorder, will they test positive even if they don't have celiac (I know positive ANA tests can mean lupus, RA, etc)? What other autoimmune disorders might test positive when taking a Tissue Transglutaminase IgA? Thanks.
  20. Hello! This is my first post. My big question is about Gliadin IgG. I was tested in 2004 and had a high positive at 64 (24 being positive). My Dr at the time told me I should cut back on gluten and diagnosed me with Sjogrens Syndrome (even though I was B12 deficient, anemic, and having such bad acid reflux that I would get sores all over the back of my throat). Recently I was diagnosed with Lupus (SLE) and asked to be tested for Celiacs. My Gliadin tests came back negative, but TtG IgG was 6 (6-9 weak positive). TtG IgA was 1.4. Tomorrow I get the endoscopy and biopsy. I'm so confused as to why I tested so high for Gliadin IgG and now it is negative. I am not gluten free. The Dr said she has no idea and they are just trying to figure it out. Ive read Celiacs does not go into remission unless you are gluten free. Does anyone know how I could have been positive 12 yrs ago and now be negative?
  21. My son has been gluten free since birth. I have Celiac's and the recommendations I/pediatrician (with very little experience with celiac's) found were that children with a gluten-free family member should be gluten-free until 3, and then they need to eat 1 serving of gluten every day for 3 months before testing. Does this match anyone else's research? Is it harmful to do it before 3? (He turns 3 in Sept and that is the start of flu season; I'm worried about potentially crashing his immune system that time of year.) Also, if anyone has been in this situation, did your children have reactions immediately? Did it take a while to build up? We are unsure what to expect from a possible positive reaction.
  22. Hello everyone. In a nutshell: I'm being tested tomorrow and I'd like to know exactly what to ask for. I know the phrase "full celiac panel", but is there more technical talk I can use to ensure the doc tests thoroughly? long story: (I'm typing on a phone, so won't get into too much detail!) I'm 40. I've had stomach and digestive issues since I was a young teenager. Bloating after meals, constant constipation. Over the counter meds for the C never helped. Once I would finally be able to go there would be loose stools, but not exact D. Ive had chronic anemia since I was a teenager. It was blamed in heavy periods, but even when those would level out a bit I could never really get much footing with my iron counts. A few years ago my iron level dropped to 6, ferritin was 2. Hair loss, fatigue, depression, anxiety, are all the constant backdrop to my life - which has often been attributed to anemia. Oh, vitamin D is also always low despite being outside quite a bit and taking supplements fir years and years. Over recent years I've restricted my diet a lot. Never suspecting Celiac. I just came to know that eating "light" felt better. I've subbed corn for flour products, cut out crackers, etc. still far from gluten-free, but it was obvious that cutting back in bready things and pasta and the like agreed with me. i don't know how it struck me recently, but a lightening bolt hit me that the one thing all my "bad foods" had in common was gluten. So on a lark I cut it out. Three days later my belly was flatter than I can ever remember it being. I was also comfortable (though still constipated), I felt light and cheerful and my mind felt very sharp. I had abundant energy and felt worlds better than I can ever remember feeling. Honestly, I was FLOORED. This went on for a few more days of me feeling on top of the world for the first time in my whole adult life. Only then did I read up on what all the symptoms of celiac can be and it was practically autobiographical. So I see you have to be in a gluteny diet for testing. At this point I was gluten-free for only a week. I made an appointment and requested to be tested. That appointment is tomorrow. I've been back on the gluten train since Tuesday evening and I'm miserable. I've probably been overdoing it, having about 3-4 servings a day. I look pregnant and feel ready to pop. Do you all think the testing should be fine despite that one week of gluten-free? The doc thought it would be okay, as long as I started eating it again in the meantime (3 days). Ive always assumed I had IBS, so this new possibility is overwhelming. I imagine that I'll be giving up gluten after testing either way bc the relief I felt during my tiny trial was emmense. Something else gnawing at me is the symptom of pale yellowish stool. While that is not something I experience, one of my children does.
  23. Celiac.com 05/19/2017 - Did you know that now, according to Beyond Celiac 83% of those with celiac disease are misdiagnosed or undiagnosed? Did you know that the average time a person waits to be correctly diagnosed, according to Daniel Lefler, M.D., M.S, of the Celiac Center at Beth Israel Deaconness Medical Center is still six to 10 years? This has changed little in the past 10 years, even though celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Over a four year period, people with undiagnosed celiac disease cost an average of $3,964 more than the healthy individuals (Source: Long et al, 2010. Did you know that 5 - 22% of people with celiac disease have an immediate family member (first degree relative who also has celiac disease, and that there isn't yet a pharmaceutical treatment or cure for it? In 2009 WebMD reported that, in the USA, celiac disease has quadrupled over the last 50 years, yet many people who have the disease remain undiagnosed. Still Dr. Stefano Guandalini, N.D. Director of the Celiac Disease Center at the University of Chicago told WebMD, "Many of these people have no symptoms, but many do have symptoms that are not recognized for what they are. We believe that only five percent of people with celiac disease know they have it". Is there any wonder that a woman at the dietician's office at our local hospital where I sometimes volunteer did not know she had celiac disease? This is because she was only experiencing symptoms of joint and muscle pains, abdominal pain and laboratory tests only showed anemia. She was first referred to an orthopedic specialist, then an internist, and neither checked for celiac disease or questioned her further. "Hello!!" Are there still general practitioners out there who are not aware that there is a blood test for celiac disease? Some people experience symptoms found in celiac disease such as a "brain fog," depression, ADHD like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition. When removing gluten from their diet it removes symptoms. At my first biopsy of the bowel the gastroenterologist failed to biopsy the jejunum. My blood test was positive, the biopsy of the dermatitis herpetiformis proved positive too, and it wasn't until I insisted on a second biopsy of my jejunum that I was diagnosed. If I had not been persistent, I would have given up after the first biopsy and continued itching and ingesting gluten. Persistence, or stubborn determination (i.e. knowing my own body) paid off, but it took a year for the dermatitis herpetiformis to totally rescind, most particularly the sores on my scalp. You know your own body better than anyone; you know when something is wrong. If your grocery store fails to give you good service you go elsewhere. The Celiac Disease Foundation, both in Canada and the United States, can help you find the right doctor to discuss your symptoms so you can get diagnosed and treated. Shop and find your own healthcare practitioner. Do not allow a doctor tell you that you are neurotic, perimenopausal, or their favorite: "stressed." Since there are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body, and some people develop celiac disease as a child, others as an adult, you owe it to yourself to keep checking and researching and reading magazines like Celiac.com's Journal of Gluten Sensitivity, because, according to the Mayo Clinic, there is no cure for celiac disease. The American Journal of Gastroenterology, at ScienceDirect.com, offers a nationwide view of celiac disease, and conducted two randomized trials that tested strategies of early or delayed gluten introduction in infants, and neither strategy appeared to influence the risk for celiac disease. They also indicated that breastfeeding did not protect against celiac disease. "While disappointing, these results should spur the study of wider environmental risk factors beyond infant feeding, such as intrauterine and perinatal exposure as well as environmental influences later in life, including drug exposure, microbial infections, and the mictobionme. Given that celiac disease can develop at any age, it is imperative to study these proposed triggers so as to elucidate the loss of tolerance to gluten and to develop future intervention strategies." At the start of the Gastroenterology study, between 2000 and 2001 - 11.1 out of every 100,000 people had celiac disease. Toward the end of the study - between 2008 and 2010 it was up to 17.3 out of every 100,000 people. However, researchers noted that the incidence of celiac disease plateaued after 2004. It is no big surprise that they believe, according to Dr. Stefano Guandalini, M.D. "that only about 5 percent of people with celiac disease know they have it." Web MD reported that "Celiac Disease had quadrupled." Many physicians I approached whilst completing this survey indicated it was physician knowledge of the signs and symptoms of celiac disease that has caused a greater increase in celiac testing and the use of a simple blood test (tTG-IgA). The Tissue Transglutaminase Antibodies test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The same test will come back negative in about 98% of healthy people without celiac disease. Although rare, patients with celiac disease could have a negative antibody test result. There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like Type 1 Diabetes, autoimmune liver disease, Hashimoto's thyroiditis, psoriatic or rheumatoid arthritis, and heart failure. This test is not good for someone who has been following a gluten-fre diet on their own. A biopsy of the small intestine is still considered the only way to diagnose celiac disease by many doctors. Many parents are reluctant to submit their young child to a biopsy of the Jejeunum and have used only blood tests, including the IgA Endomysial antibody (EMA). This test has a specificity of almost 100% but it is not as sensitive as the tTG-IGA test, because about 10% of people with celiac disease do not have a positive EMA test. Also, it is VERY expensive in comparison to the tTG-IgA and it requires the use of primate esophagus or human umbilical cord, so it is usually reserved for difficult to diagnose patients. The Total Serum IgA is used to test for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTC-IgA or EMA result. If you are IgA deficient, our doctor can order a DGP or tTg-IgC. The decimated gliadin peptide (DGP-IgA and IgG) is a test that can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies. Even though it is very rare, it is possible for someone with celiac disease to have negative antibody test results. So please do not become discouraged even with negative results, if you are still experiencing symptoms talk with your physician and undergo further medical evaluation. Keep in mind that some of these tests are not medically covered by insurance. Did you know that you can get genetic testing for celiac disease? People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25 - 30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease. However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%. Since celiac disease is genetic this means it runs in families. First degree family members (parents, siblings, children) who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseases when the genotype is unknown is 7% to 20%, which is a big difference! We cannot blame ALL physicians for the lack of a correct diagnosis. It is one of the most puzzling, multi-faceted diseases, and a patient going into their family physician's office may have very vague symptoms. Thousands of dollars may be spent on blood tests, referrals to specialists, x-rays, and scans before a diagnosis is found. There is nothing more deflating or frustrating to someone who has a myriad of legitimate symptoms than to be told that they are either depressed, stressed or suffering from an overactive imagination. Sources: The American Journal of Gastroenterology https://celiac.org http://www.beyondceliac.org
  24. Hi everyone, just wanting your opinion on whether you think my 9 yr old son could be coeliac. He started vomiting about 5 weeks ago and complaining of a sore tummy. First doctor said constipation and told him to drink some water. 2nd doctor ordered bloods and coeliac screen. Results CLINICAL NOTES: IMMUNOLOGY SPECIMEN: SERUM COELIAC DISEASE ANTIBODIES REFERENCE RANGES Normal Low Mod. Strong Deamidated Gliadin IgG * 24 CU (< 20) (20-50) (51-80) (> 80) Tissue Transglutaminase IgA * 24 CU (< 20) (20-50) (51-80) (> 80) INTERPRETATION Low level of tissue transglutaminase antibodies of uncertain clinical significance. RECOMMENDATIONS If clinical suspicion remains high, tests on a fresh blood sample for HLA DQ2/DQ8 are recommended. Negative DQ2/DQ8 virtually excludes coeliac disease. If DQ2/DQ8 positive, small bowel biopsy may be required. They are calling this low positive. We had tested genes and while waiting for results my son got very sick and was admitted to hospital for an inflamed large bowel which they then attributed to him having clampobacyter. They then said all his symptoms and possibly the coeliac screen results were because of this bug even though his symptoms started 3 1/2 weeks before he got sick with the bug. They sent us home and and said he'd get better. 2 days later I drove him to our closest city to another hospital as he couldn't stop throwing up and they admitted him again. They finally agreed after discussions with 3 c different departments and infectious diseases that the bug was not the cause of his existing symptoms but are still reluctant to look at coeliac even though his gene test came back positive for 2 genes. They have tentatively diagnosed him with gastro paresis as he is vomiting up to 11 times a day. He is pale, has dark circles under his eyes and complains of constant tummy pain that increases at times during g the day. I guess I'm just wondering if he fits the profile for coeliac or at this point in just hoping it is so I know what's wrong and can do something g to fix it instead of just watch him get sicker. Thanks so much for any response. xx
  25. Hello everyone! I am new to this so bare with me if I mess something up I've never posted on a forum. So on Friday I will be getting a biopsy done to confirm celiac disease. I'm wondering if I had a positive blood test what are the chances that the biopsy will come back positive showing blunted villi. I know its hard to say if you aren't a doctor but I'm curious. I guess I'm just looking for reassurance that I'll get a positive result. I know that sounds weird, like "wait you want celiac disease?" but I'm only 21 and I've been sick for so long and been to countless doctors and no one knows whats wrong with me. I finally think this can be the "thing" and maybe I can start to feel like a human instead of a zombie. Thanks for the input in advance!
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