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Found 47 results

  1. Sorry for the long post, I've been dealing with this forever and want to figure it out! Hi, I just got tested for celiac (blood test at a family practice (USA)) without knowing that I had to have been eating gluten regularly for it to show anything. I read forums here that said so, so I called the doctor's office before my test to ask if that was true, and they put me on with a nurse that said "I've never heard of that, but let me check the test we have....Oh, yep, it says to eat gluten. So just eat some bread before you come today." Seemed doubtful. I ended up NOT eating any gluten, and I've been actively avoiding wheat for at least 3 years (I noticed a gluten intolerance when I started college, my dad and uncle and 2 cousins can't eat it either). I was accidentally glutened with the tiniest bit of fajita seasoning from a restaurant 3 weeks prior to my blood test, but that's it. I didn't want to make myself sick with bread after reading that the blood test really only works if you've been eating it for weeks/months, so I went and got tested with basically non gluten in my system at all. The test itself said "negative." But I've attached a screenshot of my levels. After talking with the nurses on the phone twice, I'm convinced they know nothing about it. My antibodies were low/normal, probably because I haven't eaten gluten in years. (I sometimes drink beer made with barley instead of wheat because it doesn't give me horrible stomach cramps, but I hadn't had any in probably a month). The one thing that seemed "high" to me for someone who hasn't eaten wheat in years was the tTG IGA (I have no idea what that means). Mine said 7.2 U/mL (again, whatever that means). This family practice test says that a normal level is under 15 U/mL, but all my other levels are less than 1. After some research, I came across what "normal" levels should look like and Mayo Clinic suggested under 4.0 U/mL is negative for celiac (Source) [4.0-10 is a "weak positive"]. Like I said, I'm not very trusting that the practice I went to knows anything about celiac. I know if I want a diagnosis I should go to some specialist. But I really don't want to get put under just to be told "yep, do exactly what you've doing for years, avoiding gluten." So, I decided to sort of "self-diagnose" myself with celiac JUST to make myself be extra careful, you know, just in case my intestines are damaged whenever I get cross-contaminated food. My question is: does anyone else think it's possible I have celiac? Or am I being nuts? Recap & Symptoms: In 2014 I could barely eat anything in my house because I would be sick with horrible stomach cramps and constipation that would make me cry and have to stay home the next day. I lost weight then. Someone suggested going gluten-free, and I knew my dad was doing that because he had a couple passing-out episodes and similar gut pain. My uncle (dad's brother) also has a sever intolerance to gluten, like it gets him hospitalized because of malnutrition and cramping (I'm pretty sure he has celiac, but he's too stubborn to get tested). I tried avoiding gluten for a week and felt way better. Now I've been gluten free for years. Like I said before, though, I am not careful with barley and rye. Malt hurts me a lot, and when I take one bite of, say, a donut thinking it'll be worth it (I miss donuts..) it NEVER is. I'm out for two days after that. If I get glutened, I experience: fatigue, horrible cramps, gas (that won't pass), constipation (for days), foggy head, itchy skin, irritability, and my appetite fluctuates like crazy-- one minute I'm so full I can't think of food, another I'm starving.
  2. Hi everyone. Has anyone ever heard of a doctor ordering an endoscopy biopsy before doing a blood test? When I asked my GP for a celiac test she sent me straight to a GI doctor without doing any blood tests. The GI asked about all my symptoms and I litterally handed him the list (in addition to describing some of it). He immediately ordered an endoscopy with biopsies and a colonoscopy. After he left the room I realized he didn't mention blood work so I asked his nurse to ask him about it. She came back saying he said he would do it after. I'm actually fine with that because I've read horror stories of people with negative blood tests not being diagnosed for years. But I'm curious as to why he would choose to do it in that order. I can't find any stories or articles showing the biopsy preceding the blood test. Is it possible he saw all my symptoms and decided not to beat around the bush and just go for it? With that in mind, I had the endo and colonoscopy today (no turning back now). If the biopsies show celiac, will there be any reason for the blood test? Thanks, Kat
  3. Hi everyone, Back story: I was diagnosed with a borderline wheat allergy as a toddler, but the same allergist told my mother that spelt and Kamut (types of wheat) were ok to feed me. So, I have no idea how reputable that doctor was, and I’ve been eating wheat most of my life. I’ve got tons of issues because of it, and recently went to a gastroenterologist familiar with celiac to see if I needed to worry about complications developing or anything like that. He said I needed to do the gluten challenge and serology testing to find out whether I have Celiac, or gluten sensitivity with some other condition, before he could move forward. After much deliberation, I decided to do the gluten challenge, and I am currently two weeks in. I am miserable, worried it’s affecting my job stability, and struggling to get through my days. The doctor told me I could do the gluten challenge for a minimum of two weeks, but that I should really do it for a month if I can. I can’t. I’m going to try and get through a third week and then give up. Question: The doctor’s nurse told me to go in for the blood test 4 weeks after I stop the gluten challenge. I can’t find anything about waiting any length of time between the challenge and the serology. Does anyone have experience with this or know anything about that waiting period? Thanks for your time, Cassandra
  4. Hi I'm new to the forum and need some help please. I have had RA and Sjorens for over 6 years. Also anemic and while following that up they did a lower and upper scope and biopsies. The biopsy came back boarderline for Celiac disease. Bloos test was done and while waiting for that I started to do alot of research about the disease and seemed from what I read that the blood work would come back positive. Nope couldn't be that easy the blood work came back negative. So now I'm not sure which is the most accurate? I figure I should just follow that diet and see what happens but I have read it could take up to 2 years to see real results and doubt I could do that without an actual answer. Please help!!
  5. Hi Everyone, I am sure that this question has been asked multiple times but I am new to this forum as well as the Celiac world. I haven't been feeling like myself health-wise for a couple years now, with my stomach always being bloated, crampy, irritated, and just plain old not feeling well. I am a 20 year old nursing student so I had not had the time to focus on what the issue may be but I finally decided that I wanted to figure it out. I love pasta, but every time I ate it my stomach would expand to the size of a 5 month old pregnant woman and become rock solid I got tested for gluten sensitivity and the test came back as having high allergen gluten IgG levels. It says that the normal amount is less than 2.0 mcg/mL and my results read 6.4 mcg/mL. The doctor at my school said the only way to determine if this is Celiac is to get a biopsy and see a GI doctor. It's not easy for me to do that as I am a busy student, out of state. I was wondering if anyone knew if this was a good indication of Celiac or non-celiac gluten sensitivity. I know it is hard to determine from that one test but I'm looking for all the help I can get. Thank you! - Naomi Moore
  6. Hey there, I'm new! I've spent quite some time on this site reading up and thought I'd ask the experts. In end of November I started experiencing symptoms (toilet and gas focus) which in January really started escalating enough to send me to the doctor. I explained my symptoms and got a blood test and results about 10 days ago. My 'Deamidated Gliadin IgA was high at 31 U/mL (normal being <15) while the other results were all normal. Doc told me to go to GI for endoscopy, although stated this isn't a 'huge' increase. Meanwhile my symptoms started escalating to the occasional vomit, massive fatigue and feeling like I would collapse while walking to work. I'm reading a lot about this now (though still don't feel knowledgeable at all), and I'm wondering 1) does this number give any indication of celiac as a stand alone? No family history. 2) Is it possible that if it could be celiac, that it can happen so quickly? It just seems to be so sudden so I'm quite confused. I'm seeing the GI next week for next steps. It's just been a tough couple of weeks and I don't seem to get much help from the GP. Any tips would be appreciated!
  7. Celiac.com 01/22/2018 - Celiac disease is marked by HLA-DQ2/8-restricted responses of CD4+ T cells to gluten from wheat, barley or rye. Currently, in order to properly diagnose celiac disease based on serology and duodenal histology doctors need patients to be on gluten-containing diets. This is a problem for many people, who prefer not to begin ingesting wheat again once they have adopted a gluten-free diet. This can present challenges for doctors attempting to diagnose celiac disease. It is known that HLA-DQ–gluten tetramers can be used to detect gluten-specific T cells in the blood of patients with celiac disease, even if they are on a gluten-free diet. The team set out to determine if an HLA-DQ–gluten tetramer-based assay can accurately identify patients with celiac disease. The research team included Vikas K. Sarna, Knut E.A. Lundin, Lars Mørkrid, Shuo-Wang Qiao, Ludvig M. Sollid, and Asbjørn Christophersen. They are variously affiliated with the Department of Immunology, Oslo University Hospital – Rikshospitalet, Norway; the KG Jebsen Coeliac Disease Research Centre, University of Oslo, Norway; the Department of Gastroenterology, Oslo University Hospital – Rikshospitalet, Norway; the Department of Medical Biochemistry, Oslo University Hospital – Rikshospitalet, Norway; and with the Centre for Immune Regulation, Oslo University Hospital – Rikshospitalet and University of Oslo, Norway. For their study, the team produced HLA-DQ–gluten tetramers and added them to peripheral blood mononuclear cells isolated from 143 HLA-DQ2.5+ subjects. There were a total of 62 subjects with celiac disease on a gluten-free diet, 19 subjects without celiac disease on a gluten-free diet due to perceived sensitivity, 10 subjects with celiac disease on a non-gluten-free diet, and 52 seemingly healthy individuals as control subjects. The team used flow cytometry to measure T cells that bound HLA-DQ–gluten tetramers. They then used researchers blinded to sample type, except for samples from subjects with celiac disease on a gluten-containing diet, to conduct laboratory tests and flow cytometry gating analyses. They also conducted analysis on test precision using samples from 10 subjects. They found that an HLA-DQ–gluten tetramer-based test that detects gluten-reactive T cells identifies patients with and without celiac disease with a high level of accuracy, regardless of whether patients are on a gluten-free diet. This test could conceivably allow celiac diagnosis while suspected patients are still on a gluten-free diet. The team notes that their results require a larger study for validation. Could reliable celiac diagnosis be done without making patients consume gluten? Will that become common? Stay tuned for more developments. Source: Gastrojournal.org
  8. Hello Everyone! I had a blood test back in December and had an ultrasound on January 2nd. This was all due to some weight loss after having gallbladder surgery in 2016. I just chalked it up to not wanting to eating fatty foods afterwards and having smaller portions. I wasn't too concerned, since I felt way better (I was a bit overweight before the surgery.) I had a bit of abdominal pain, but I was told that was normal after surgery. My mother was concerned and so I went to my doctor with her. My doctor said I probably had Irritable Bowel Syndrome (as a side affect from the gallbladder) and ordered me to get some blood work and ultrasound done. The doctor's office called and said we needed to talk about my tests, the receptionist said it wasn't bad. This happened on the day of the ultrasound, so of course I was worried! I scheduled for an appointment with my new doctor the next day (old one sadly retired, had her since I was born). I was nervous that night, but just chalked it up to it not being that serious. Next day I go to the doctor's and she tells me how clear my ultrasound was and how there were no blockages. Few! Next, she told me how my blood work came back normal (cholesterol, iron, hormones, ect), I was so elated! But then, she told me I tested positive for Celiac's Disease. My happiness drained away in an instant, I hadn't heard of the disease before, but knew it wasn't good. She then told me what it was and how it could cause cancers. Next, she said I needed to have a biopsy done to confirm it. I was shocked and afraid. I had thought it was just a vitamin deficiency, nothing this bad. Currently, I'm waiting to get a biopsy done and am remaining on gluten. The thing is, I'm pretty scared! Cancer has run in my family. It killed my Grandmother, my Uncle, and recently my Aunt this past summer. I know celiac disease causes your rates for certain intestinal cancers to go up, and that has me worried right now. I'm afraid I'll have lymphoma when I get my biopsy done. So I was wondering if my ultrasound and blood tests being fine meant I didn't have it. Just having some clarification would make me feel all the better right now. I could really use some kind words and encouragement.
  9. Hello, I've been having a lot of stomach problems recently, so I thought to get tested for a few things including celiac disease. My results are interesting though. If anyone could give me insight on what this could mean please let me know! Picture attached with the blood test in question with doctor notes. Thanks
  10. Hi, I went to my GP with stomach pains, bloating, fatigue, numbness in hands/feet. They suggested a celiac screening, and my results are as follows: Immunoglobulin A (range 70-400 mg/dL) result: 237 (in range) Endomysial IgA Abs, IFA NEGATIVE result: NEGATIVE titer (in range) Transglutaminase Ab,IgA (range <15.0 U/mL) result: <0.5 (in range) Gliadin Deamidated Ab,IgG (range <15.0 U/mL) result: 0.5 (in range) Gliadin Deamidated Ab,IgA (range <15.0 U/mL) result: 18.6 High My GP suggested i see a Celiac specializing GI. I keep getting mixed messages online when I research what these results mean, and I couldn't get an appointment for a few weeks. Any suggestions/advice would be greatly appreciated! thank you!
  11. Hello, I need some advice. I have had a positive blood test for celiac. My doctor referred me to a GI specialist but my appointment is not until May (I live in Canada, so it is covered by OHIP but the wait times are ridiculous). I started the process of getting tested because of a rash on my elbows, knees, and bum. I have attached pictures of my knees and elbows (excluded my bum). My blood test results are also included. I am very certain that I am celiac. My question is, with the blood work and rash, would you wait until May to have an endoscopy done to confirm diagnosis or go ahead and cut gluten from your diet to alleviate symptoms? My rash is so itchy, it keeps me up at night. I have an 8 month old son who also keeps me up at night. Before I realized Celiac was a possibility, I thought I had brain cancer because of the brain fog/dizziness/memory loss. Once I googled my rash and other symptoms, and had the blood work done, it all makes sense with celiac. What would you do??
  12. Celiac.com 09/12/2017 - Are we at the beginning of the end for celiac disease? The last few years have seen numerous advances in celiac diagnosis and treatment. People diagnosed recently and in the future face a very different world than that faced by celiacs just five or ten years ago. In the old days, the process of properly diagnosing involved blood tests, endoscopies, and biopsies. In the near future, a simple blood test may do the trick. In the old days, the only treatment was a life-long gluten-free diet. That is still true, but the writing of change is on the wall. Here are five advances that will change the way celiac disease is diagnosed and treated in the future. These advances may well signal the beginning of the end of celiac disease as we know it. Blood Test Diagnosis (Without Biopsy) Researchers are getting better at identifying likely celiac cases using blood tests alone, without biopsy. As these techniques are refined and integrated into medicine, chances are pretty good that in the near future, large numbers of people will be diagnosed for celiac disease without the need for biopsy confirmation. Can Antibodies Spot Celiac Disease in Kids Without a Biopsy? Kids Can Get Accurate Celiac Diagnosis Without Biopsy Celiac Diagnosis Without Biopsy Can Be Useful in Some Cases Portable Gluten Detectors Imagine a future where you can take a bit of food you're not sure about, and pop it in a portable tester that will tell you if the food is gluten-free. A few years ago, that might have been the future of science fiction. With several companies looking to introduce just such kits, that future looks a lot more certain. Innovative Device Eliminates Gluten-Free Guesswork This Device Can Help Tell You If Your Food Is Actually Gluten-Free nimasensor.com Enzymes Enzymes that break down gluten might help people with celiac disease to enjoy a more normal life by protecting them from minor gluten contamination, and allowing them a bit more confidence when eating away from home. A number of manufacturers are currently working on enzyme treatments that are specifically designed to break down gluten for people with celiac disease. AN-PEP Shows Promise in Breaking Down Gluten in Stomach Enzyme Shows Promise In Dissolving Gliadin Peptides in Celiac Patients Could Carnivorous Plant Enzymes Act Like Beano for Gluten? Could Enzymes from Oral Bacteria Treat Celiac Disease Bio-Therapeutics—Hookworms They sound gross. The thought of having their guts infected with a parasitic worm makes people's skin crawl. However, researchers have documented the gut healing abilities of parasites like hookworm. When hookworms are introduced into the gut of people with celiac disease in the right amount, and kept at therapeutic levels, patients see their celiac symptoms disappear and their guts return to a healthy, normal condition. While still very much in the experimental phase, researchers are keen to investigate various strains and to determine the best therapeutic levels for these treatments. If all goes well, treatments based on parasitic worms will likely become more viable and more common in the future. Celiac Patients Tolerate Wheat Spaghetti After Hookworm Treatment Have Celiac Disease? Try a Little Hookworm with that Pasta! Can Bloodsucking Parasites Help Treat Asthma and Celiac Disease? Controversial Pig Parasite May Soon Be Sold In Germany To Treat Disease Bio-Therapeutics—Fecal Transplant Could fecal transplants be used to cure or to treat celiac disease? Much like hookworms, once you get past the 'yuck' factor, fecal transplants are proving to be cheap, easy, reliable way to treat gut conditions like C-Diff and, possibly celiac disease. The idea is to get some healthy poop in your gut to inoculate it with beneficial microbes. The effects are nothing short of astonishing. As they are studied, developed and refined, look for bio-therapeutic approaches like fecal transplant to play a role in treating gut contains like celiac disease. A Case of Refractory Celiac Disease Cured By Fecal Microbiota Transfer Vaccine A vaccine against celiac disease would be a holy grail of sorts. Receive a dose, or maybe multiple doses over time and become immune to the adverse effects of gluten. Several companies are working on a vaccine that would basically eliminate celiac disease. Many of these have moved through the early trial phases and several have shown enough promise to move to trials in humans. This is a very exciting area of research that may pay huge dividends in the near future. Celiac Disease Vaccine Set to Begin Full Human Trials Would You Try a Vaccine for Celiac Disease? Celiac Vaccine Clears First Big Clinical Trial This Vaccine Could Be a Game-Changer for People with Celiac Disease The main takeaway from these developments is that we are now living in an age where the diagnosis and treatment of celiac disease is the focus of tremendous research and development on numerous fronts. Many of these will likely result in products, tests, or treatments for celiac disease that were unimaginable just 5 or 10 years ago.
  13. Hey guys, I will try and keep this as short and concise as I can. About a year ago, I had a very long day at work and ate a lot of chicken wings and a very poor diet. The next week, I felt terrible. I head headaches, GI issues, fatigue and some muscle aches and nasal congestion. I thought it was just a stomach bug, but a cycle of this sickness continued throughout the whole summer. Basically every other week I would be sick with fatigue, headaches, nausea, GI issues and I felt feverish and nasal congestion. I finally went in for blood work (CBC, vitamin and mineral levels were tested) and everything came back normal. I was perscribed a probiotic and it didnt help. A couple months later, I went in for a colonoscopy and an endoscopy and tested negative for Celiacs and just had mild acid reflux. I still stopped eating gluten since January and felt better. However, there were still times that I felt "crappy" again. This could have been from cross contamination or me just eating gluten. But basically, I came home from college and I felt great for about 6 weeks. Then, I accidentally ate Ragu sauce that was not gluten free and I felt crappy again with feverish feeling, headaches, fatigue, nasal congestion and diziness. Ever since then, I have felt "crappy" 3 seperate times. Two weeks ago, I ate meatloaf twice with bread crumbs and a whole beer (which i knew was gluten). A couple days after I ate the meatloaf, I started to get headaches and the past couple days (about a week after drinking the beer) have been terrible with bad headaches, body aches and feverish with nasal congestion again (so ive been sick for about 12 days in a row now) I am scheduled to go in to see an allergist in about a month..... 1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity..... 2) Do my symptoms match up with a person with a gluten intolerance? THANK YOU FOR READING THIS WHOLE THING. I REALLY NEED AND APPRECIATE THE HELP!!!
  14. 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.
  15. I have been having on and off stomach aches for about a year. I get frequent gas, bloating, urge to go poop, and my stomach almost always hurts in the lower part, like where my belly button is. I went to the GI last month and he ordered some lab tests and an upper GI. The upper GI came back negative. The lab tests tested for Celiac disease, and three of them came back negative except for the t-Transglutaminase (tTG) IgG. My result was a 6 (weak positive), normal being from 0 - 5. My Immunoglobulin A also came back low (51), with a normal level being from 87 - 352. I read about Immunoglobulin A deficiency and saw that people who are deficient are more likely to have celiac. I also read that people with celiac and IgA deficiency could have skin rashes, and I also have eczema. I'm going to do an endoscopy next month, but I was wondering if it is likely that I would have gotten a false positive since my result was just barely positive?
  16. Hello, I'm hoping someone will be able to help. The short question is on how to convince my doctor of (or research on) the need for an endoscopy with negative blood work results... The background: I'm in my late 30s, w annoying/severe digestive discomfort for more than a decade, which a GI a few years ago semi-diagnosed as IBS without doing any real investigation. More recently I've had debilitating fatigue, severe anxiety, and several other symptoms, and recently realized it could be celiac when talking to a friend who'd been diagnosed in his 40s last year. My regular dr is usually quick and thorough in ordering tests. I asked her for celiac tests about 3 months ago, and they came back negative (the panel included: Deamidated Gliadin peptide Ab IgG, Tissue Transglutaminase Ab IgA, and total IgA). At that point, I was so sick, didn't know when her referral to the GI would go through, and so decided to try going gluten-free. It's been a huge, dramatic change. I know that I shouldn't have stopped gluten before the full testing process, but I have a small child and had just gotten so fed up with being sick and didn't know whether it would be months and months longer to see GI. Finally saw GI last week. Talked to her resident for some time, then she came in and immediately told me I have IBS, that there is absolutely no way I could have celiac with negative blood work. I knew that wasn't true, and I stood my ground, but she was dismissive and arrogant and completely refused to order a scope (and said that in her hospital it would be a 6 month waiting time anyway). I've been glutened a couple of times since going gluten-free 10 weeks ago and was far sicker than when eating gluten all the time, and for a week each time. Definitely can't do a gluten challenge. So my problem is this: the GI said that my regular dr can order me an endoscopy, although it's not yet clear whether it'll be covered (I'm in Canada), but my reg dr is reluctant because she's deferring to the GI's opinion. She was open to ordering the scope if my genetic tests were positive, but getting the results is weeks away. Basically, I want an endoscopy asap because in many places I've read that damage can take longer than 10 weeks to go away, but I don't want to wait months and have evidence gone. Does anyone have any research they could point me to illustrate the need for endoscopy w negative blood work? (I really like my reg dr for everything else, so don't want to change to a different one, and the GI appt took months to get, so finding another one isn't exactly an option right now because of the window of time since I stopped gluten.) In some ways I'm ok with having no diagnosis, since going gluten-free has literally given me hope that I didn't think I'd ever have, but I also have reasons (including my child's health) for wanting to know definitively... Also, should I have also gotten ttg igg and Deamidated gliadin iga? The GI dr offered to do EMA now, but with a gluten challenge which I physically cannot do... Many thanks!!
  17. Hi everyone, This is my first post so bear with me. I have been lurking and reading many helpful posts but was hoping to share my current situation and ask for advice. Around 2 months ago I got what I thought was the flu. I had a fever, aches, diarrhoea and an odd fast heart rate with a bounding pulse. I also developed high blood pressure for the first time in my life and it was usually around 150/100 when high. Most of the symptoms cleared up in a couple days but the diarrhoea and heart complications remained. I have seen a cardiologist and they ran me through tests like ECG and 24 hrs halter. The diagnosis was that my heart was structurally normal and he thought my heart was reacting to the virus as I recovered. In the first month I lost about 10-15lbs and became pretty weak. My stomach would normally feel fine through the day but would cause a lot of bloating pain overnight. I eventually saw a GI doc and he ran a series of blood tests for me. My thyroid, liver and full blood counts were good but the celiac screen showed a positive value. Below were my results. anti-gliadin peptides iga 13, normal range 0-25 anti-gliadin peptides igg under 2, normal range 0-25 TTG IGA 3, normal range 0-20 TTG IGG 31, normal range 0-10 So it would appear my TTG IGG was the only positive which seems a bit unusual. The GI doc would like to do the biopsy but I have concerns about getting put to sleep when my heart is abnormal. I am hoping I can consider the elevated TTG IGG as a diagnosis and forego the biopsy if possible. I have 2 young kids and am 32 right now so I am hoping to look at Long term recovery. In terms of background I had GBS when I was 18 so I have a history with autoimmune. My Sister has autoimmune arthritis and my Mother has autoimmune psoriasis. My grandpas sister and my cousin have celiac disease. I started taking some vitamin supplements and feel better but the worst symptoms remaining are the heart complications, achey joints and poorly digested food. Thanks for your time.
  18. Hello, My GP has advised a two week gluten challenge. I've never fully removed gluten from my diet but for the past year I've eaten smaller quantities. I'm on day 7 of the challenge and I've had the worst headache and bloating that I've had in ages! I feel sick and the thought of eating more wheat makes me shudder. My previous bloods have shown inflammation and high igA levels on and off. What exactly do they look for in the igA levels? Could high igA alone suggest I'm coeliac? Would one more week of eating gluten really be enough time? How long does it take to then see a gastro for a biopsy on the NHS? I'm wondering as I'm running out of time to be tested before I go travelling for 6 months and my GP isn't coeliac aware as such
  19. Hi!! I'm so glad I found this website!! I have been convinced I had problems with gluten since the winter of last year. I am nearly always bloated, as long as I can remember I eat a ton of carbs and would only poop 1-2 times a week and I always clogged the toilet. Last year in the winter my hair started falling out, out of nowhere. I freaked out and changed my shampoo, conditioner, haircare treatment and stopped using heat. I also went completely gluten free. The hair loss stopped and I was going to the bathroom regularly, feeling lighter and just amazing. Near the end of this past summer I started eating gluten again and since Ive been to college I have been eating gluten regularly. Low and behold, my hair has been falling out more than it ever has!!! It started again in august and I have now lost most of the thickness of my hair. Every time I touch it, more comes out. I still treat my hair amazingly, as I have since last winter. the only thing that has changed lately is my diet. Since it got SO bad I've been to the doctor for some blood tests but he doesn't explain anything to me and seems to brush off any symptoms I give him. I'm an 18 year old girl. So we did some testing a few months ago, and then some testing recently. Can anyone PLEASE help me interpret these results?? All of the pictures are attached and the dates are next to the results, but I'm not sure what order they will appear in. Any help would be appreciated!!!! Annie
  20. Hi Everyone, I just recently got a transglutaminase A (tTG) blood test done recently because I wanted to rule out having celiac disease since I’ve been having IBS like symptoms. My results were conflicting and I don’t know If I should be concerned I might have celiac disease. I’m also looking to get pregnant soon and wanted to make sure I don’t put myself or my baby in harm if I do have celiac disease. My symptoms, have been slightly burning itchy skin on my chin, abominal pain, bloating, recurrent diarrhea, hormonal imbalance, and general IBS symptoms. My results: IgA: 0.21 normal range is <= 0.90 (negative) IgG: 1.28 normal range is <= 1.28 (positive) My dr. says she thinks that I probably don’t have celiac disease based on my symptoms, but the results are inconclusive so she is not sure. She said she will direct it to the gastroenterologist to give me a diagonsis and will get back to me. I was wondering if others had conflicting results and should I brush it off if the Dr. tells me I don’t have celiac disease? Should I get a second opinion? Not sure what other questions I should ask or if I'm missing something. Thank you, Teresa
  21. Waseemshahid

    Is dis celiac disease ?

    Hi everyone !!! I have 9 year old daughter , she sometime feels pain near belly button for few minutes , it happens once r twice in a weak .. Or in a month ! I have her blood test report sharing with u .. Can u have any idea about it , is dis look celiac disease ?
  22. My doctor thinks i might have coeliac disease, but i hope not, the thought of not being allowed to eat all the things i love to eat for the rest of my days is daunting! Changes to social life, eating out, bbq's and the all the other joys of life would be immense! I have had two blood tests done for celiac disease, the first one came back as 7.2 u/ml (normal range 0.0 - 6.9 u/ml) The second one which was taken about a month later came back as 22.0 u/ml What do these results generally suggest? I am a 47 year old UK male. 13 stone. 6ft tall. I'm booked into see the gut specialist next month and to get a biopsy done. My symptoms which have been going on for about 8 months now include bouts of diarrhea, slight upper stomach aches, fatigue/weak feeling joints in lower body like legs, knees, hips and feet, tingling/burning/stinging feeling in buttock area and backs of legs. slight pins and needles in fingers and toes, slight bloating, small patchy rashes/dry skin that come and go. All of my symptoms are never really that bad, but they all just come and go and are a bit uncomfortable, sometimes they do get worse, but it doesn't stop me getting on with my daily life. Just want to get to the bottom of what could be wrong. When i eat breads, cakes & cereals (which i do a lot) i don't really notice that it makes my symptoms any worse, so can this be down to gluten? Any advice much appreciated. Regards J.
  23. Hello, I'm just a little confused with my test results and whether they're actually indicative of possible celiac, so any advice is really appreciated. For background, I've had digestive problems for as long as I can remember. When I was a baby, I had difficulty gaining weight, threw up formula constantly, and was pretty colicky. As a teenager, I had embarrassing stomach cramps and abdominal pain, diarrhea, constipation, and bloating (this was really bad and really noisy at times). Those problems have persisted into adulthood (I'm 31). Furthermore, I'm deficient in several vitamins, including b12 and D, and I've tested high for bilirubin before. I've had clay-colored stools, persistent diarrhea (especially in the morning), and my stools regularly float. I've also had neurological problems, including episodes of nystagmus, double vision, headaches that last for weeks, shooting nerve pain on the side of my face with minor temporary hearing loss, and numbness/tingling in hands, not to mention frequent fatigue (usually in the afternoon) and slurred speech and memory/articulation problems. Although an MS specialist identified several signs, others neurologists didn't see those signs (ophthalmologists didn't either), and I've had two negative MRIs. So no idea what's going on there. I've also had problems with my lady parts, specifically polycystic ovaries. In June, I had a weird stomach issue. I had relatively severe abdominal pain in my lower right side plus severe nausea and decreased appetite. I almost went to the hospital thinking it was my appendix, but the pain never worsened, so I didn't go. Bad nausea persisted for about two weeks, though, and it took about a week for the abdominal pain to completely go away. A few months later I started having episodes that would start with abdominal pain around my bellybutton and end with diarrhea (the oh-my-god-I'm-dying type). For about a week after the pain, I'd get severe nausea, body aches and chills, and a low-grade fever. I had about three of these episodes before I screw it and went to a gastroenterologist. The gastroenterologist mentioned celiac, among inflammatory conditions, and ordered a blood test and a colonoscopy and endoscopy. A nurse from his office called to say that I had a slightly abnormal celiac panel, with my "antigliadin IGG levels signaling a weak positive." I looked at the actual results, though, and I can't figure anything out. It seems like the only test I had a weak positive for is the one that's not even recommended for testing celiac anymore because it's not sensitive. So, while they say it's an abnormal panel, I'm thinking I should dismiss the positive altogether. Then again, I don't really know what the heck is going on with these tests. Here's what they read: IGA IMMUNOGLOBULIN 203 (range 81-463) DEAMIDATED GLIADIN IGA (0.0-19.9) 6.5 DEAMIDATED GLIADIN IGG (0.0-19.9) 3.0 ANTIGLIADIN IGA 0.0-19.9 (0.0-19.9) 5.8 ANTIGLIADIN IGG 0.0-19.9 (0.0-19.9) 21.1 (only positive result) TISSUE TRANSGLUT.IGA (0.0-19.9) 5.6 TISSUE TRANSGLUT.IGA 0.0-19.9 1.9 My guess is that these tests don't reveal that I likely have celiac, which is disappointing because so many of those old symptoms (even the neurological ones) could be explained by celiac. But I also know there's a protocol to testing for celiac, and I have no idea if that protocol was used here. The gastroenterologist wants to do a biopsy, which I'm all for, but I also want to go into that endoscopy realistically and not have high expectations. Any advice or opinions about this test would help a lot to acclimate me and give me a better idea of the results and what to expect for the biopsy.
  24. I was wondering if someone could help interpret my blood test results. It appears to me to be a negative result, but in the notes my GI doc said, "Results are indicative of Celiac" so I am very confused. Tissue Transglutaminase Antibody, IGA <1 (<4 means no Antibody detected) Immunoglobulin A: 215 (Flag reference range: 81-463) I would be most grateful for any help analyzing these results, if anyone feels moved to share their insight with me. Thanks so much!
  25. My 7 year old has had digestive issues since she was a baby. She had severe Cholic as a baby. Then as a toddler had problems with toilet training. She eventually potty trained and then regressed at 5 years old. And now has Encopresis. She was referred to a GI specialist recently as we have been going to the doctor over this for years and keep getting brushed off. The GI did a blood test and she tested low for Alakaline Phosphetase. Her Celiac came back as this: TTG AB IGG <1 U/mL <6 No Antibody Detected > OR = 6 Antibody Detected (TTG) AB IGA <1 U/mL <4 No Antibody Detected > OR = 4 Antibody Detected Can someone tell me if this is normal??? Does she have Celiac? Is she borderline?? I know very little about this disease, and am so frustrated with not having any answers to my daughters condition. Can someone interpret this for me? Thanks!