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Found 20 results

  1. Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud. Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions. According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests. SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company. Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added. Stay tuned for more new on how the Theranos fraud story plays out. Read more at azcentral.com.
  2. Hi all! I went to my primary care doctor at the beginning of May with major GI upset and a super foggy head. I am overweight, so she immediately thought it was my gall bladder but ran multiple blood tests, including a celiac panel. The only test that came back abnormal at all was my celiac panel. An abdominal ultrasound came back normal, with the exception of a known case of non alcohol fatty liver disease. Based on these results, she informed me that I almost certainly have celiac disease and referred me to GI for further testing. I finally saw the GI yesterday. I've continued to eat gluten since it's necessary for a confirmation, but I feel awful after I eat it. My brain becomes so foggy that I really shouldn't drive. Anyway, the GI doctor took one look at my test results and said that I do not have celiac disease because I don't have any of the symptoms and none of my other blood work indicates that I have celiac disease (he specifically cited anemia as one factor, which I do not have an issue with). He basically refused to do an endoscope and told me that I have IBS and all of my issues are due to my weight. He said the foggy head was because I have "undiagnosed sleep apnea and blood is being sent to my intestines instead of my head after eating" and I should have a sleep study done (I do not have ANY symptoms of sleep apnea except, I guess, foggy head). My test results were: Deamidated Gliadin ABS, IgA - 82 (Strong Positive>30) tTG IGA - <2 (Negative 0-3) Immunoglobulin A - 104 (Normal 87-352) What do you guys think? I feel better when I don't eat gluten, but I'm not sure if it's an intolerance or sensitivity issue or if it could be full-blown celiac disease. I thought I had an answer but now I'm back at square one and am kind of lost on what to do next. I've already contacted my PCM for a follow up with her, but I thought you good people could provide some insight from your experiences.
  3. Hi Everyone- I went to my doctor recently and had my second Celiac blood test. I have been gluten free for about 9 months now. My first test was "inconclusive" because of a low IgA. My second test is negative- but again, Im gluten free now. My doctor does not want me to have to eat gluten again for a months, so he suggested ELISA/ACT Lymphocyte reactivity testing. Has anyone ever heard of this? Its a blood test that tests my white blood cells reactivity to MANY foods and chemical additivies- gluten /wheat being one of them. The test is fairly easy, though I have to go off all antihistamines for 4 days, and for 2 days, I have to consume/use NO chemicals- so no body lotion, hair conditioner, make up, etc. The test also is not covered by insurance, so there is a cost I have to consider. Wondering if anyone had heard of this kind of testing, or better yet had any experience with it? I really do want a true diagnosis as I am getting married soon, and we are talking about children and I want to know what Im dealing with before I go down that road. But.... Im pretty convinced be it celiac or intolerance, my body doesnt like gluten - so I dont want to have to eat it to find out!! Thanks !! RNRN
  4. Hello! I'm an older adult who just received my celiac blood panel results and as so many others, I'm confused. Can anyone help me interpret my results? My results are the following: Deamidated Gliadin Abs, IgA 6 Negative 0-19, weak positive 20-30, moderate to strong positive > 30 Deamidated Gliadin Abs, IgG 58 Negative 0-19, weak positive 20-30, moderate to strong positive > 30 t-Transglutaminase (TTG) IgA 3 Negative 0-3, weak positive 4-10, positive >10 t-Transglutaminase (TTG) IgG 8 Negative 0-5, weak positive 6-9, positive >9 Endomysial Antibody IgA negative Immunoglobulin A , Qn, Serum 165 87-352(mg/dL) My doctor called and told me to start a gluten free diet until my next appointment. Are these results consistent with celiac or with gluten sensitive disease? Thank you for your help.
  5. I went to a GI for my digestive issues, never thinking it could be celiac. He didn't either, but ordered some bloodwork including the celiac screens just in case. We were both shocked when one of the markers was positive! I'm going for an endoscopy in a few weeks but asked for a copy of the labs, and I'm wondering if anyone has seen labs like this and gotten a positive diagnosis, or what else it could mean? Deamidated gliadin IgA - 3 Deamidated gliadin IgG - 3 tTG IgA - <2 TtG IgG - 27 Endomysial antibody - negative Total IgA - 164 The TtG IgG is clearly positive, but the others are confusing. Also just to note, my white blood cell was slightly high (0.5) and my alkaline phosphatase was high (120). My TSH was normal. Thanks!
  6. Hey guys. I recently visited a GI for some original gastritis diagnosis due to excessive alcohol use turned digestive issues. The digestive issues include bloating, gas, diarrhea from the gastritis diagnosis and then a few days of normal stools and then flip flopping between diarrhea and regular stools but then recently i had a few days of constipation and now I think I'm back to diarrhea. My concern started with me seeing clear undigested food in my stools that got me really scared and then I just kept seeing food and it was terrifying. Doc doesn't suspect celiac and thinks it might be IBS and the PPI from the gastritis but did tests nonetheless. The results came back and everything was normal expect for my MCHC, MCH, BUN, and Creatinine levels. He also did an endoscopy and said my stomach has mild inflammation and the duodenum appears normal but took biopsies as he has to have them looked under a microscope to actually see damage. I'm really really scared about the biopsy results which I won't know for another week or so. All this is happening so quickly and I've been suffering since my gastritis diagnosis two months ago with all these different problems. If someone could help me out with how likely you think that I do have celiacs or just learning to deal with this stuff it would be so so great. I'm in my freshman year of college and I'm so scared. Here are the numbers for these four as well as my TtG and IgA: MCHC: 31.3 g/dL MCH: 24.7 pg Creatinine, Serum: 0.53 mg/dL BUN: 5 mg/dL IgA: 239 mg/dL TtG: <2 U/mL Both the IgA and TtG were reported as "normal". They said that the MCH and MCHC levels were not so drastically low so there was no need to worry. I noticed that other people's posts about the blood results contained some GDP tests? The IgA and TtG were the only celiacs related tests on my blood report. Please help me as much as you can. Thank you so so much!
  7. Just got an email about the free screening and education day. If you are in the Chicago area, you might find this helpful & fun! Links might not work because I am just copying my email. Just copy and paste the link to the U of C's site to register. I am in Chicago for a wedding , so I might pop over. Please join us at our Annual Celiac Education Day! Celiac Education Day: On October 22nd, join The University of Chicago Celiac Disease Center in a free, educational event not to be missed! Celiac Education Day will feature three guest speakers, a live Q&A panel, as well as our free blood screening. Schedule of Events: 10:00 a.m. - 11:00 a.m. Q&A Panel with Dr. Stefano Guandalini and a panel of experts 11:00 a.m. - 11:30 a.m. Personal and Psychosocial Challenges of Celiac Disease (Presented by Lori Welstead, RD, MS, and Tina Drossos, PsyD) Celiac Education Day events are free and open to all, but preregistration for the Blood Screening is mandatory. Registration will open on September 14, 2016. For more information please visit: www.cureceliacdisease.org. Celiac Education Day: Free Blood Screening, Educational Sessions and Product Sampling! All events will be held at The University of Chicago Medicine, Duchossois Center for Advanced Medicine (DCAM Building), 4th Floor, 5758 S. Maryland Avenue, Chicago. For directions, please visit www.uchospitals.edu. You are eligible for the Blood Screening if: You have been on a gluten-containing diet for at least 12 weeks prior to testing; You have a close family member that has celiac disease or Type 1 diabetes; You have Down Syndrome; You have a related autoimmune condition such as rheumatoid arthritis, MS or Addison's Disease; You have digestive problems, chronic fatigue, osteopenia/osteoporosis, or Type 1 diabetes; You have other related symptoms or conditions;
  8. Hi, i have got several questions to ask... first of all here is my long story! I have been having a lot of symptoms which I believe sound a lot like celiac disease after reading hundreds of forums! I've had these symptoms for about a year but they have worsened in the last 5 months. These include: severe tiredness/fatigue, severe bloating to the point where I look 7 months pregnant even first thing in the morning, excessive gas in the evening and night which smells really bad, feeling like I need to burp at night, feeling sick at night, frequent stools sometimes 5 times a day, soft stools sometime with blood or undigested food, dark circles under my eyes, rash around nose, constantly hungry, mild anxiety. I went to the doctors with these symptoms and she ordered 15 different test along with celiac tests. She initially said it sounded like Ibs, but after my research I know that doctors use this as an escape route! So after I had my blood tests done, o decided to go gluten free for a bit just to see how I felt. However I know that you have to be eating gluten if you had to have a biopsy done, I knew it would be a long time before I would have that done which is why I embarked on the gluten free. As soon as I stopped eating gluten my symptoms improved 95% apart from te bloating but I understand that if you have celiac this could take time to go down. So eventually my blood tests came back, everything was normal apart from I had low vitamin D and high esr which indicates inflammation in the body, however my celiac results had not returned. I was informed these tests take longer and would be another 2 weeks. A month passed and no results. Rang the hospital and for some annoying reason they didn't do the celiac test and had disposed of my blood. This means I have to have it done again! Meanwhile I've gone gluten free and I know that for accurate results you must be eating gluten! I stopped eating gluten for 2/3 weeks. I started eating it again 2 weeks ago. My questions are... 1) do my symptoms sound like celiac? 2) how long should I eat gluten for again before getting another test baring in mind I didn't eat gluten for 3 weeks? Would appreciate anyone's help! Just want to know what is wrong with me!
  9. Hi all I was wondering if you could help me. I believe my teenage daughter is Coeliac. She has a skin condition which the doctor, try as he might cannot rule out that it is Dermatitis Herpeformas. When I requested a blood test, one of the doctors was very dismissive and said it was a fungal infection despite me listing lots of other issues and also the fact that she had to go dairy and gluten free when she was younger for six months, she also had a blood test then which was negative. He ordered a test very relucantly and it came back normal. When I questioned the results with another doctor he was not particularly helpful. I have since questioned him a number of times on the test but he just changed the subject. I believe that my daughter has not been given the full set of tests and I was wondering if you could help me in confirming this, so that I am ready and prepared for when I take her back next week. The test which was performed was "Anti-tissue transglutnase lev" and her level was 4iu/mL on the sheet it states "- Normal Negative 0-14; positive >14 If present this TTG assay detects both IgA and IgG antibodies. A negative TTG result does not support a diagnosis of coeliac disease, provided diet includes gluten. A negative TTG result suggest compliance with a gluten free diet in a known coeliac. Is this test sufficient? Do I need to request "a full coeliac panel"? Now my daughter is very tall and is going onto the overweight side, (although she doesn't overeat) she used to be underweight when younger and was sent to a dietician as she was on "failure to thrive" but after I cut gluten and cows milk out she put on weight. Apparently she "doesn't fit the coeliac description" but I have been researching and have found that people with DH do not necessarily have as many stomach complaints and she is suffering with really bad muscle cramps, tingling in hands and feet, headaches, has had spasms in her back for years, (she has had two MRI scans and nothing is wrong with it). The final sympton is what I believe to be DH. When her bloods were done they also ordered a FBC and because her levels are in normal range he says that he doesn't need to do any further tests. She also has a vitiligo patch on her arm (which she has had most of her life) and has just recently started to spread. I have only just realised that this can be connected to Coeliac or thyroid issues. My would issues with iron and thryroid show in a FBC or do I need for further testing of vitamin levels etc such as Vitamin D. There was one number on her bloods which was slightly out but only a little which was her MCH which was 26.9 . Her FBC was: Haemoglobin estimation 134 g/L (115-160) Total White cell count 7.2 10*9/L (4.00-10.50) Platelet count 260 10*9/L (145-400) Mean corpuscular volume (MCV) 80.8 fL (78.0-100) Haematocrit 0.405 (0.36-0.46) Red blood cell (RBC) 5.01 10*12/L (4.10-5.10) !mean corpusc haemoglobin (MCH) 26.9 pg (27.0-35.0) mean corpus. Hb. conc. (MCHC) 332 g/L (310-360) Neutrophil count 4.64 (1.80-7.70) Lymphocyte count 1.84 (1.30-5.50) monocyte count 0.48 (0.20-0.80) Eosinophil count 0.21 (0.02-0.40) Basophil count 0.03 (0.00-0.20) Any comments would be much appreciated. We left the doctors with him saying she needed to do a two week gluten free challenge to notice any effects. Within 24 hours she had gone from 4-6 toilet stops a day to 2. However she had severe stomach cramp on gluten free. Could this be because her gut is not used to working efficiently? Any suggestions would greatly help as I just feel deep down there is something going on particularly with the cramps and spasms really impacting at the moment even when she just gets up out of a chair. Thanks
  10. Hello, I'd love a little advice/information from people who probably know more about this than I do. Sorry for the slightly long post... I am 32 and female. The only real health problem I have had is endometriosis, which was diagnosed and treated in 2002 and I have had no real problems with since. I am generally very healthy. Last year, in May 2014, in began having some abdominal tenderness just above my belly button if the area was pressed (usually by my toddler's rather enthusiastic hugs!) and left-sided discomfort (waist level) at my back sort of radiating round to the side. I also felt quite full after eating only a little. My GP ordered an ultrasound, which was normal, and a whole range of blood tests, also all normal. Things continued and in September, my GP ordered a coeliac screen which came back positive. My tTGA was 15.3 (normal range 0-6.9) and endomysial antibodies were positive. At the end of November I had an endoscopy and biopsy (4 samples were taken), which came back negative for coeliac disease. In December I started experiencing problems with upper abdominal bloating and also constipation (sorry if tmi, but I could actually go four or five times a day, but just a couple of very tiny little pellets). I also began feeling lightheaded after eating and, with the exception of feeling hungry, felt so much better if I didn't eat or drink at all. So my GP repeated the coeliac screen to see if the first test was an anomaly. This time my tTGA was 35.7 (normal range 0-6.9) and endomysial antibodies were positive. My gastroenterologist (who discharged me back to my GP after the normal biopsy) said I categorically do not have coeliac disease because of the negative biopsy and to continue as normal (with no guidance as to what was causing or would help my current symptoms). My GP agrees that I don't have coeliac disease. So, my question: is there anything else that can cause a positive result on a tTGA blood test other than coeliac disease? My GP and the gastroenterologist both said false positives can occur. My GP suggested I trial a gluten-free diet, but I'm concerned this is a very strict diet and unneccesary if I don't have coeliac disease and will delay/prevent an accurate diagnosis if I do. I have a two year old son, so if I do have coeliac diease, I understand he should be tested? I don't know where to go with this now. Prior to all this starting last year, I had never even heard of coeliac disease. I also don't know if these blood tests are clouding the issue of what is actually causing my symptoms if they really are just false positives... I would really appreciate any advice or insight... Many thanks in advance!
  11. Hello I have just joined the forum and have been reading for hours and learning soooo much. I just want to check that I had the proper tests before I get to far along on a gluten-free diet. Antinuclear Ab (ANA) 1:80 range <1:40 ANA ifa pattern Homogeneous Gliadin Deamidated AB IgG 37.1H range <=20 neg, 20.0-30 weak positive, >30 positive Gliadin Deamidated AB IgA 56.7H range <=20 neg, 20.0-30 weak positive, >30 positive Transglutaminase AB IgA, EIA >100.0H range <=20 neg, 20.0-30 weak positive, >30 positive Endomysial IGA Antibody Positive range negative ENDO TITER 1:10* no range is given I was not a big gluten consumer prior to testing although the las few years after doing the SCD diet for 2 years I would consume gluten occasionally ( I maintained a low carb diet) with a more frequent consumption 4 - 6 months prior to these tests after deciding. I do have Hashimoto's thyroiditis. Thanks Diane
  12. Hello everyone. I've been having many different symptoms and I just wanted to see what some people's thoughts were on this. I've been having seemingly random bouts of diarrhea, terrible gas, heartburn, and abdominal discomfort recently. When I say recently, I mean that in the past month at least one or two of these symptoms is happening every day in some way and it's sometimes mild and sometimes severe, but in the past year, I have been struggling with these symptoms on an intermittent basis.The gas is what is usually there constantly along with stomach rumbling, but I also have gotten heartburn several times in the past few weeks, and it's usually accompanied by the gas and when I have heartburn, it's painful to the point of not being able to concentrate. Last time I had this heartburn and gas, I remember that I was eating a few bagels in a hurry a few hours beforehand. However, today I feel mostly fine except for some minor stomach pain I got a few hours after eating and weakness when I tried exercising. I had pasta with vegetables for lunch. Some days, though, I will have a bad headache and feel a bit fatigued as well as have difficulty concentrating. Sometimes when I wake up and stand up I feel dizzy or I will have tingling in my feet. I also have issues with anxiety that definitely are linked to some of my GI distress as well, though. I did go to a family doctor and I will be going to get blood tests done for several things including TSH, ANA, iron and b12 levels, CBC, CMP, wheat allergen, and of course Celiac. I guess it's just weird that I was talking about all my symptoms and that I feel almost completely fine now. I know the symptoms are varied for Celiac, but does this seem like it really could be the case?
  13. Hello, I was recently tested for gluten intolerance. While I don't think I haven Celiac Disease, I received my results online via My Chart, but I haven't gotten the chance to speak with my doctor yet. Would anyone be willing to take a look at my results and let me know their thoughts? Thank you in advance.
  14. People sometimes say: you used to eat gluten and you were fine before. How did you suddenly develop gluten intolerance? The answer lies in the story of how my baby's food allergies saved me: I had experienced bloating, and intestinal pain for years, but it all became more severe in 2013, post partum. For the previous decade or so, I had consulted GP doctors about vague intestinal abdominal issues and episodes of low iron, B-12 and folic acid deficiency. Because I complained of "something going on" in my abdomen, the doc ordered an ultrasound of my ovaries and found nothing. On other occasions, I was told I might have irritable bowel and that it can bother some people more than others. As for the low iron, I was told it is common (I'm sure that's true!), so not to worry. After I had my second child by c-section, I had worsening symptoms and daily intestinal inflammation, visible contractions, swelling, bubbles moving through and visibly rising up through my abdomen. You could see the tunnel lift! I thought the surgeon had put my intestines in too high after my c-section, it was so bad. I started getting more frequent migraines with auras and hypoglycemic days. I started to look grey skinned. I had an itch all the time and canker sores. My post partum weight dropped quickly and then I was lighter than my athletic "race weight" whilst eating piles of food. People asked "How I lost my baby fat so fast". My stools started turning into black, sticky, pasty cow patties that I could not flush. I had to wipe them down. They stank. My belly kept blowing up like a balloon after supper, like there was a great fermentation kit inside me. I was tired. I was sick. I had infections. I started bruising easily. I had flu like symptoms and deep fatigue all the time. I am an athlete, so I was exercising and was fit, but I felt totally unhealthy. There is a difference, and I could feel it. Then I started walking into doors and loosing my balance. I couldn't think clearly and close my mental circuit. I put my keys in my daughters loot bag. I pressed the brake pedal and wondered why my car wouldn't go. I felt like I was suddenly getting Alzheimer's. My swim coach told me I looked awful. I knew he was right. I was in the midst of planning to go to my doctor, but I was busy with my baby and five year old. I was also dealing with my baby's food allergies: protein enteropathy / IgG allergies and FPIES .... see www.IAFFPIE.org . And, ironically, this is what saved me. Because my 5 month old was reacting to my breastmilk and he had enteropathy and allergies to all cereals and formulas, as well as Food Protein Induced Enterocolitis Syndrome to rice, I changed my diet. I took out all gluten from my diet so my nursing baby would no longer be in pain. Bingo. We both got better. My abdomen stopped rising and giving me pain. My stools gradually improved over a few weeks until they were normal again. The other "weird" symptoms I had been having, lifted. Even the edema in my legs dropped, and I hadn't even known that was not normal. I learned that pregnancy can be the environmental trigger for the onset of active or "more" active celiac disease. I went to my doctor and did the blood tests. Unfortunately, by this time, I was gluten free for a couple of months and they came back normal. Since this time, I have felt frustrated by the lack of diagnosis. I feel I lack the leverage for my children to be assessed for celiac and for me to be screened for other things. And it is hard to navigate the world without being seen as following a gluten free fad. But I'm sure I have it. Looking back some years... I did not menstruate until I was 16, and the enamel on two of my teeth never formed. I was always told it was from tetracycline. Now I'm not so sure. Since my twenties, I've been asked by dentists if I'm a smoker due to my yellowing teeth. Despite my healthy lifestyle, my enamel has always been poor, and stained dreadfully. Not to mention the veneers hiding my unformed teeth. And then I've had the on off cycles of intestinal flare ups and pain for 15 years or so. And the vitamin deficiencies. Now, when I am glutened, after nearly a year gluten free, I get migraines, diarrhea, itches, canker sores, and fatigue and aches. I think I've just about convinced myself I have celiac disease. The question becomes, how do I proceed for my children and potentially my own diagnoses. My baby, now 16 months is still gluten free, but he has numerous food issues, and I have no idea how, and when I will assess him properly. My daugher shows subtle signs... they could mean nothing, but I fear they may be the first clues and I'm not sure when to tackle it. I don't want to loose that precious chance to get her tested at the wrong time, in case it comes back as a false negative and I loose that leverage for later. My daughter: Daughter with alternating constipation with pale, sometimes white, cream or mottled, floating bits, bulky stools, steatorrhea Frequent bloating Abdominal pain around intestines, rather than stomach Itchy skin Irritability greater with gluten Teeth: decalcification and grooves and concave shape, possible sinds, dentist noted shape Frequent pins and needles FPIES to oats at 6 months. Outgrew by 3 or 4. Thanks to any and all who ploughed through my story. I welcome your thoughts.
  15. Hi! I just had a ton of blood work done and my apt isn't until Wednesday to review w/ the Doctor. Here are my results that I don't understand, the rest was "normal": HLA-DQ2 Neg HLA-DQ8 Neg HLA-DQA1 01 and 05 HLA-DQB1 0301 and 0602 TSH 1.72 t4 Free 1.3 T4 Total 6.8 Thyroid Antibodies less than 10 T3 Uptake High at 36 IGA 5 Immunoglobulin A 130 Tissue Trans Ab IGA TTG Antibody IGA Less than 1 Vitamin D 20 (Low) Sodium 133 (Low) Casein/cow milk High at 7.7 Absolute Neutrophils 9074 High I also tested negative for all nuts and corn. How accurate are the blood tests? Thanks!!
  16. Apparently both my son's have high tests results...I was wondering if there are any doctors that will give a positive diagnosis off of the blood test alone. Meaning no biopsy? Thanks! Alex age 4 Deam Iga Index 212.3 Gliadin IgA postive Glia IgG Index 137.9 Gliadin IgG positive TTG IgA index greater than 100 TTG IgA AB positive Robert age 6 Deam Iga Index 115.5 Gliadin IgA postive Glia IgG Index 60.1 Gliadin IgG positive TTG IgA index greater than 100 TTG IgA AB positive
  17. Hello, I don't want to subject anyone to my life story, but maybe some background would be useful. I have no way of knowing if all my problems are related, of course, but... I'm a 26 year old female. I've had stomach issues of one kind of another since childhood (alternating between C and D), along with frequent headaches and periods of lightheadedness. I also have acid reflux symptoms, gas/bloating, depression/rapid mood swings/anxiety, trouble paying attention, memory loss, fatigue, asthma, sometimes I have pain in the middle of my chest, sometimes I have pain in the area where my spleen is, other random pains that Dr. attributed to very low vit. D levels... I've also had a rash on my shins for like 6 years. It used to come and go, but for the past few years, it just hasn't gone away. Every time it was almost gone, it would flare up with a vengeance and I just had to scratch it because it's really horribly itchy. I would scratch the flesh off to the bone if it was reasonable to do so, it's just maddening. My Dr. thought it was excema, but the cream she gave me didn't help. In times of poverty, my survival mode diet has consisted primarily of bread and pasta. After about a month of this, my stomach was in constant turmoil. I was having stomach aches, and for all my years of digestive issues, I wasn't really prone to actual stomach aches. So between this and not being able to deal with the embarrassing noises my stomach was constantly making (seriously, if I don't eat it's growling, if I do eat it's making higher pitched gassy sounds for the rest of the day, I can't win), I finally went to my doctor about it. She ordered a celiac panel for me (that's all that was specified on the script, so I guess the lab decides which tests to run?). Here are the results: Gliadin AB IGA 1 (<20 is normal) Gliadin AB IGG 39 (<20 is normal) Tiss Transglutaminase IGA 0.4 (<15.1 is normal) Immunoglobulin A (IGA) 132 (70-400 is normal) On the lab results, my doctor wrote: "So, stop eating gluten. Good luck." But, the Gliadin AB IGG is the only thing listed out of range, and from what I can tell from the internet, this isn't a very good indicator for celiac... Right? I haven't really talked to her about it, but honestly, she isn't really familiar with the disease so I don't think she'll be much help. I've been gluten free since I got the results- about 6 weeks now. Or trying to be gluten free, since it seems like there's a lot of hidden gluten everywhere. The only thing that has improved is the rash. There is scarring, but at least my legs are finally free of bloody scabs (crossing fingers that this lasts). But, I'd also like my stomach to be better. I'm sick of it being noisy, I'm sick of looking pregnant and I'm sick of being in pain. What do I do? Stay on the gluten free path and see if other things improve? Start eating gluten just to see if things get worse? Request more reliable blood testing? Do I have to call around different labs and ask what they do when someone comes in with a script for a "celiac panel"? I didn't mean for this to be so long. I really hate to sound like one of those people who's too lazy to do her own research. Honestly, I really have tried, but there's so much different information that I'm having trouble compiling it and reaching some kind of conclusion based off it. My mind doesn't work the way it once did, to the extent that my boyfriend is getting worried about the severity of my short term memory loss and fears one day I won't remember who he is... Anyway. Thanks to anyone who read this.
  18. I've been suffering various symptoms over the last three years. Tested slight RA positive, have Reynaud's - but tests for Sjogrens and Lupus negative. I'm frustrated the Dr's can't find the cause. My recent search led me to Celiac. I've been ordering my own blood work hoping for answers, but now that I have my results back I'm confused. All negative but a slight low immunoglobin A Qn. Spent hours researching this, so far it seems I may need additional tests to rule out Celiac's disease? One site said AGA and EMA are required when you have a low immuniglobulin - I think these were done with my blood panel but I'm not sure. Also another site said that if you do have a low immunoglobulin A Qn other antibodies testing for autoimmune disease may show a false negative. Does this mean I could still have Lupus or Sjogrens but test negative???? Should I be concerned and what other test would I need if any????? It's been so long and I'm so frustrated having no answer, appreciate any help or direction. Test results: Deamidated Gliadin Abs, IgA 3 (negative 0-19) Deamidated Gliadin Abs, IgG 2 (negative 0-19) t-Transglutaminase (tTG) IgA <2 (negative 0-3) t-Transglutaminase (tTG) IgG <2 (negative 0-5) Endonysial Antibody IgA negative Immunoglobulin A, Qn, Serum flagged as low - 90 (negative 91-414)
  19. Could use a little support or feedback or something. Kinda in limbo at the moment. [history] Had symptoms which celiac could explain for *years.* Primarily (but not limited to) intense abdominal pain/GI issues and fatigue/energy issues. Talked to my doctors last year, but unfortunately I didn't talk to my PCP herself, and I ended up having my worries sort of blown off by the nurse practicioner I spoke to (we did eliminate thyroid issues, diabetes, and severe anemia as causes, at least; this year we also eliminated vit D deficiency, liver issues and gallbladder issues). Talked to my PCP *this* year (Late September) and made sure she knew just how bad the pain is and how often it happens, and she ran a couple of tests including a celiac panel, which she and I both thought was a short in the dark. She called me back early October and said it looked like celiac was a good possibility, which was initially really depressing, but have since done a bit of research (including reading through some of the stuff you guys posted here) and switched over to hopeful, because if cutting out gluten would actually get rid of the pain issues and the fatigue/energy issues, Oh My God would it be utterly worth it, and it seems like it wouldn't be nearly as restrictive as I initially feared. [/history] Anyway, met with GI specialist a few weeks ago who said based on test results I amost definitely do have celiac. (TTG, IGA 15 (flag reference range =<4), GLAB IGG >100 (flag range =>20), GLAB IGA 58, flag range >=20)- all with significant amounts of gluten-y bread products in my regular diet, in case anyone asks.) She reccommended endoscopy to get more data. Had upper endoscopy today. Not a fun thing, but glad it's over and done with. She did the endoscopy herself, and said there were no obvious signs of celiac disease, but she's waiting on biopsy results, which we will discuss when we meet next week. Meantime she wants me to get the blood tests re-done in case the blood test itself was a false positive, which I will do on Saturday. She still seems convinced I probably have it and that I may be either be not be in a particularly severe phase with it, else the damage is farther down than she actually went. She's still encouraging me to stop gluten now (now that the endoscopy's done), so I can feel better asap. I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty dang sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac. Anyway- anyone had similar experiences? Knowledge, wisdom, hope, etc. to empart? This forum has actually already helped me tremendously, though I haven't posted yet. =)
  20. Hi Everyone....I'm really hoping I can get some help here, and hoping I don't come across like a hypo-chondriac. The past few years have been medically very difficult. I'm a woman, in my thirties, in the military and a mother of two. Three years ago, I went to the ER for a horrific migraine. In true military fashion they strapped me down and gave me a spinal tap (came out clear) and only then did they run a blood test. I was yelled at for being "malnurished." I didn't understand...I eat all the time and take vitamins. Fast foward a few years, on and off sick, exhausted (I figured I was working too much), headaches, anemic, hair loss, dermatitis, constant reflux. The reflux was so bad, the acid was eating away my vocal cords. I live on Zantac and Nexium now. I was mute for three months. After six months of wrong diagnoses, I was sent to a civilian specialist in Philly. A surgeon. Brilliant man who I consider responsible for keeping me speaking after three reconstructive surgeries. He SWORE I had signs of hypothyroidism. Three tests - all negative. He was baffled. Then, my molar broke. I've had one cavity my entire life....and now my teeth are breaking. Then, last night, I saw a news program talking about this strange thing called Celiac Disease - for which hypothryroidism symptoms are often confused. They started listing the symptoms. I pulled out my med record (yes - all 6" of it from just the past few years - I have it all here) and started looking at my recent blood panels and tests. I'm anemic, Vit K, Vit D and Alkaline Phosphate deficient. Not just a little - MARKEDLY. Like, minimum of 10-15 points below the low baseline numbers on all of them. Low cholesteral and very low triglicerides (with **** next to them). My teeth are literally breaking, losing my hair, dermatitis, and severe reflux has damaged my esophagus and permanently damaged my vocal cords (three surgeries to keep me speaking over the past year). Blurred vision, constantly sick, fatigued, and diarrhea and/or painful constipation with a ton of gas. Oh, and I didn't hit puberty until I was 16. I'm petite - literally 4" shorter than my shortest female family members. Both brothers are over 6' tall. My father died of Diabetes complications. My children have eczema (from me?). Causal? Maybe not...I guess my question is this: Am I rightly concerned?? Or am I losing my mind? Please help!!
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