GF News Alert: FDA Approves New Test

New Blood Test May Make Celiac Disease Easier to Diagnose

Blood test. Endoscopy. Biopsy. Process of elimination. Consultation of astrological charts and the reading of omens. Diagnosing celiac disease hasn’t exactly been easy.

For me, the blood test was enough. My doctor pointed to some funny numbers on a paper and told me to stop eating gluten. I felt better, and I count my lucky stars for it. Medical tests and I never got along so good, and just saying the word “endoscopy” makes me shiver.

Happily for squeamies like me – for everyone really – the blood tests detecting gliadin antibodies continue getting better. I’m happy to report that Phadia, a US company that makes a variety of different blood tests, just got FDA clearance for an even more specific test for celiac disease.

Medscape ran a good overview of the new blood test for celiac disease. Now that the tests have been FDA-approved, doctors have one more tool to help us out with.No biopsy here!

To step back for a minute, here’s a very macro understanding of the science behind the matter:

  • Gliadin is a substance found within gluten.
  • People with celiac disease produce antibodies to fight off gliadin.
  • These antibodies make people sick.
  • No gluten, no antibodies. No antibodies, no symptoms.

If you’re already on a gluten-free diet, a blood test should turn up negative; you aren’t giving your body a reason to produce antibodies.

If you aren’t on a gluten-free diet, but have gotten inconclusive test results in the past, this development could be quite exciting. The new test uses deamidated peptides as a newer, more enticing “bait” for the antibodies. Exactly what a deamidated peptide is, I don’t really know. What I do know:

  • Fewer people will be diagnosed wrongly.
  • Fewer people will need to go on to more invasive methods of diagnosis.
  • Fewer endoscopies in the world makes the world a happier place.

For those of you who are celiac – how were you diagnosed?


96 thoughts on “GF News Alert: FDA Approves New Test”

  1. My girls were diagnosed by elimination. I have RA, which is aggervated when I eat gluten. My blood test for celiac was negative, but I had already been on a gluten free diet for a couple of months.

  2. My girls were diagnosed by elimination. I have RA, which is aggervated when I eat gluten. My blood test for celiac was negative, but I had already been on a gluten free diet for a couple of months.

  3. Endoscopy for me! Which, even though I never would have believed it before I had it done, was really not horrible. Not fun, but not horrible.

  4. Endoscopy for me! Which, even though I never would have believed it before I had it done, was really not horrible. Not fun, but not horrible.

  5. I talked with my doctor about the possibility of Celiac and a gluten free diet. He suggested I try the gluten free diet and see what happens. I felt better and have been on the diet for over three years. No tests were done to confirm.

  6. I talked with my doctor about the possibility of Celiac and a gluten free diet. He suggested I try the gluten free diet and see what happens. I felt better and have been on the diet for over three years. No tests were done to confirm.

  7. I had endoscopy and colonoscopy and was told that I might be “allergic” to wheat. Then I had a blood test which confirmed the diagnosis. I don’t know if I am totally gluten free because I still have symptoms – mostly staying close to the toilet for about 3 hours after getting up. I recently began to stop eating yogurt to see if I am also lactose intolerant. Have not seen any difference (as regards the toilet)…..

  8. I had endoscopy and colonoscopy and was told that I might be “allergic” to wheat. Then I had a blood test which confirmed the diagnosis. I don’t know if I am totally gluten free because I still have symptoms – mostly staying close to the toilet for about 3 hours after getting up. I recently began to stop eating yogurt to see if I am also lactose intolerant. Have not seen any difference (as regards the toilet)…..

  9. Biopsy. They were looking for a cause for my anemia. I had never heard of Celiac Disease, and that had never been mentioned as a possibility. They had ruled our polyps (did a colonoscopy and endoscopy the same day since I was already “out”) and were looking for a bleeding ulcer. Quite a surprise. That was in 1997.

  10. Biopsy. They were looking for a cause for my anemia. I had never heard of Celiac Disease, and that had never been mentioned as a possibility. They had ruled our polyps (did a colonoscopy and endoscopy the same day since I was already “out”) and were looking for a bleeding ulcer. Quite a surprise. That was in 1997.

  11. Genetic test. I’m gluten intolerant (so wouldn’t have shown up with biopsy) and gene test showed gene for gluten intolerance. I knew I felt awful when I ate it and fine when I didn’t. That was enough confirmation for me. I go back and forth with my friend who’s a gastro, who believes that the biopsy is the first thing to try to figure it out. I tell him I would still be miserable if that was the only thing my dr tried. I’m hoping one day he’ll come around to other ways of testing :)

  12. Genetic test. I’m gluten intolerant (so wouldn’t have shown up with biopsy) and gene test showed gene for gluten intolerance. I knew I felt awful when I ate it and fine when I didn’t. That was enough confirmation for me. I go back and forth with my friend who’s a gastro, who believes that the biopsy is the first thing to try to figure it out. I tell him I would still be miserable if that was the only thing my dr tried. I’m hoping one day he’ll come around to other ways of testing :)

  13. I was diagnosed first by blood work, followed by the endoscopy. That procedure was a short nap. I don’t remember a thing. After being really sick for 10 years, it was a relief to find out what was causing it.

  14. I was diagnosed first by blood work, followed by the endoscopy. That procedure was a short nap. I don’t remember a thing. After being really sick for 10 years, it was a relief to find out what was causing it.

  15. Since I was a kid, I have been complaining about always feeling sick after I ate. It didn’t matter what I ate. Everything made me sick. I cut out dairy…still got sick. I cut out meat…still got sick. Cut out cruciferous veggies…got sick! By process of elimination, I finally realized almost every meal had some type of gluten. So I finally cut out gluten…and my gut feels much better. As well as less arthritis symptoms in my hands/feet, less “tingling” in my arms, fewer headaches. My stomach/bowel feels so much better!! The few times I cheated I felt so awful it was enough to convince me to stay away from gluten. Forever. My doctor agrees with my diet, although I’m not sure he’s completely convinced that gluten is my issue.

  16. Since I was a kid, I have been complaining about always feeling sick after I ate. It didn’t matter what I ate. Everything made me sick. I cut out dairy…still got sick. I cut out meat…still got sick. Cut out cruciferous veggies…got sick! By process of elimination, I finally realized almost every meal had some type of gluten. So I finally cut out gluten…and my gut feels much better. As well as less arthritis symptoms in my hands/feet, less “tingling” in my arms, fewer headaches. My stomach/bowel feels so much better!! The few times I cheated I felt so awful it was enough to convince me to stay away from gluten. Forever. My doctor agrees with my diet, although I’m not sure he’s completely convinced that gluten is my issue.

  17. Colonoscopy — after 9 different doctors and twice as many diagnoses. an unpleasant but simple colonoscopy showed the sprue. i still can hardly believe gluten has been the problem with everything from burning hands to early menopause, but i’m grateful for that good dr. who found it.

  18. Colonoscopy — after 9 different doctors and twice as many diagnoses. an unpleasant but simple colonoscopy showed the sprue. i still can hardly believe gluten has been the problem with everything from burning hands to early menopause, but i’m grateful for that good dr. who found it.

  19. I had the blood test. Went on a gluten free diet by reading up on the internet. Symptom free after three weeks on the diet. Spent ten years looking for answers prior to that. No other tests have been done. I’m gluten free for six years now.

  20. I had the blood test. Went on a gluten free diet by reading up on the internet. Symptom free after three weeks on the diet. Spent ten years looking for answers prior to that. No other tests have been done. I’m gluten free for six years now.

  21. I started to lose the ability to walk along with being anemic. My doctor thought I was bleeding internally, so told me to have an endoscopy and colonoscopy. The endoscopy showed villi damage, so I had bloodwork done. This proved celiac disease. Now I walk 3 miles a day!

  22. I started to lose the ability to walk along with being anemic. My doctor thought I was bleeding internally, so told me to have an endoscopy and colonoscopy. The endoscopy showed villi damage, so I had bloodwork done. This proved celiac disease. Now I walk 3 miles a day!

  23. Charlotte: Wait a minute. How did a colonoscopy diagnose Celiac when the problem is in the small intestine & your doctor looked in the large intestine (colon). My colon looks just like my husbands. I’ve seen the pictures. There are no villi in the colon. Is it possible to go all the way into the small intestine with a colonoscopy. OMG that sounds terrible.

  24. Charlotte: Wait a minute. How did a colonoscopy diagnose Celiac when the problem is in the small intestine & your doctor looked in the large intestine (colon). My colon looks just like my husbands. I’ve seen the pictures. There are no villi in the colon. Is it possible to go all the way into the small intestine with a colonoscopy. OMG that sounds terrible.

  25. Blood test came back negative but I was always sick. A nutritionist suggested trying complete elimination and it made a radical change in my health. I’m super sensitive to it. The most minute amount makes me sick for a week. At this point, it doesn’t matter what kind of test result I got, I’m never going back. I don’t think I knew what it felt like to be “normal” until now.

  26. Blood test came back negative but I was always sick. A nutritionist suggested trying complete elimination and it made a radical change in my health. I’m super sensitive to it. The most minute amount makes me sick for a week. At this point, it doesn’t matter what kind of test result I got, I’m never going back. I don’t think I knew what it felt like to be “normal” until now.

  27. I had a lifetime — literally, from infancy — of weird (and debilitating) symptoms, and had gone, at my husband’s insistence, on an intense 2 year search for the source (which led to a handful of diagnoses, but none for CD). Shortly after I gave up on the “real” diagnosis, my 3rd son was diagnosed with CD (that’s a long story in itself). As I was educating myself as his mother, I looked at the list of symptoms, and said, “Wait a minute. I have that. I have that. I have that.” I put myself on a g.f. diet. By the time I went to my general practitioner (who led the 2 year search), who then sent me to a g.i. doc, several weeks had elapsed. My blood test turned up negative, but I felt AMAZINGLY better, really miraculously better, on the g.f. diet, so my GP called it “presumed celiac disease.” That was eight years ago. I would not go back onto gluten for the most definitive diagnosis in the world.

    Still, the news of the new test is great — perhaps it would have picked up the remaining antibodies in my blood, eight years ago.

  28. I had a lifetime — literally, from infancy — of weird (and debilitating) symptoms, and had gone, at my husband’s insistence, on an intense 2 year search for the source (which led to a handful of diagnoses, but none for CD). Shortly after I gave up on the “real” diagnosis, my 3rd son was diagnosed with CD (that’s a long story in itself). As I was educating myself as his mother, I looked at the list of symptoms, and said, “Wait a minute. I have that. I have that. I have that.” I put myself on a g.f. diet. By the time I went to my general practitioner (who led the 2 year search), who then sent me to a g.i. doc, several weeks had elapsed. My blood test turned up negative, but I felt AMAZINGLY better, really miraculously better, on the g.f. diet, so my GP called it “presumed celiac disease.” That was eight years ago. I would not go back onto gluten for the most definitive diagnosis in the world.

    Still, the news of the new test is great — perhaps it would have picked up the remaining antibodies in my blood, eight years ago.

  29. I had severe anemia and becuase there was blood in my stool they were looking for internal bleeding. The Gastro’s did a coloscopy, endoscope and I swallowed the camera. All inconclusive. It wasn’t until a nurse friend of mine said, “I think you have Celiac Sprue”, that I had to convince the doctors to test for this. The Hemotologist said that I couldn’t be a Celiac becuase all celiacs had to get up in the middle of night to use the bathroom. The blood work showed positive tTg and IgG, but negative IgA so this confused them. They did the endoscope, again, this time looking at the villi, and found lots of flattened vili. The biopsies confirmed celiac disease. I was told to go, be well and go on a gluten free diet! That was it!

  30. I had severe anemia and becuase there was blood in my stool they were looking for internal bleeding. The Gastro’s did a coloscopy, endoscope and I swallowed the camera. All inconclusive. It wasn’t until a nurse friend of mine said, “I think you have Celiac Sprue”, that I had to convince the doctors to test for this. The Hemotologist said that I couldn’t be a Celiac becuase all celiacs had to get up in the middle of night to use the bathroom. The blood work showed positive tTg and IgG, but negative IgA so this confused them. They did the endoscope, again, this time looking at the villi, and found lots of flattened vili. The biopsies confirmed celiac disease. I was told to go, be well and go on a gluten free diet! That was it!

  31. I was diagnosed in college with IBS. I also found out I have lupus. Symptoms from IBS seemed to get better when I ate better. Then, 10 years later, started a family. After 2 kids, I started having severe pains after eating and also trouble swallowing. They did an endoscopy to look into the cause of swallowing issues and found flattened scilia. Gluten free and feel somewhat better. Still have swallowing trouble, but may be linked to lupus. My doctors always told me I was a puzzle. I hope the puzzle is put together soon!!!

  32. I was diagnosed in college with IBS. I also found out I have lupus. Symptoms from IBS seemed to get better when I ate better. Then, 10 years later, started a family. After 2 kids, I started having severe pains after eating and also trouble swallowing. They did an endoscopy to look into the cause of swallowing issues and found flattened scilia. Gluten free and feel somewhat better. Still have swallowing trouble, but may be linked to lupus. My doctors always told me I was a puzzle. I hope the puzzle is put together soon!!!

  33. Negave tTg, positive IgG, positive biopsy, positive genetics. The interesting thing about this is the first thing my GI doc did was the biopsy which came back with blunted villi and few other things I can’t remember. At the time this wasn’t considered conclusive so I then had all the blood tests and genetic test.

  34. Negave tTg, positive IgG, positive biopsy, positive genetics. The interesting thing about this is the first thing my GI doc did was the biopsy which came back with blunted villi and few other things I can’t remember. At the time this wasn’t considered conclusive so I then had all the blood tests and genetic test.

  35. Biopsy for me. I did not know I had a problem, never had any symptoms all my life. About 2 yrs. ago I started to have bowel problems and a rash around my wrists and then my legs. That lasted about 4 mos. before I was diagnosed by a dermatologist. I am thankful I found out so quickly. I know many of you have suffered a lifetime.

  36. Biopsy for me. I did not know I had a problem, never had any symptoms all my life. About 2 yrs. ago I started to have bowel problems and a rash around my wrists and then my legs. That lasted about 4 mos. before I was diagnosed by a dermatologist. I am thankful I found out so quickly. I know many of you have suffered a lifetime.

  37. responding to donna — i honestly don’t know. fortunately, i slept through all of it and wasn’t terribly uncomfortable afterward so i never really thought about it. i should wonder more and ask more questions but at that point i just wanted it fixed and was glad not to have an endoscopy. reading these posts, it’s amazing how much ‘work’ it is for this to be diagnosed!

  38. responding to donna — i honestly don’t know. fortunately, i slept through all of it and wasn’t terribly uncomfortable afterward so i never really thought about it. i should wonder more and ask more questions but at that point i just wanted it fixed and was glad not to have an endoscopy. reading these posts, it’s amazing how much ‘work’ it is for this to be diagnosed!

  39. Was diagnosed 3yrs ago with 25 delayed food allergies, one of which is gluten. In the same year I was diagnosed with Hematuria which is blood in the stool. This past year I became lethargic and found my B12 to be low. Migraines and sinus problems problems were the reason for the test. Sage Medical has several labs all over the country and a good website as well. I was fortunate enough to have a lab locally but you can have your family doctor order the test for you. They called with the results and gave me a book with personal reviewed results and suggestions for how to start my new lifestyle, gluten free. Highly recommended for anyone seeking answers to unexplained longterm health issues.

  40. Was diagnosed 3yrs ago with 25 delayed food allergies, one of which is gluten. In the same year I was diagnosed with Hematuria which is blood in the stool. This past year I became lethargic and found my B12 to be low. Migraines and sinus problems problems were the reason for the test. Sage Medical has several labs all over the country and a good website as well. I was fortunate enough to have a lab locally but you can have your family doctor order the test for you. They called with the results and gave me a book with personal reviewed results and suggestions for how to start my new lifestyle, gluten free. Highly recommended for anyone seeking answers to unexplained longterm health issues.

  41. Had the Celiac Panel Blood test done 2 years ago. All the levels were very elevated. Doctor confirmed it with and EGD which also was positive for celiac disease. My EGD biopsy showed no villi. Went in because I thought I had gall bladder disease. Bad thing was that I was tested for Gall bladder disease 10 years ago. Had a colonoscopy and an EGD at that time but no biopsy was done in the EGD!! So I probably would have been diagnosed 10 years ago. After going on the gluten free diet…… felt better in less than 4 days with no pain in abdomen. Wonderful feeling!! Sister and her oldest daughter diagnosed because of me. By the way…. have been anemic since 5 years old…… I am now no longer anemic. Have I been celiac my entire life? Could be… I am 48 and feel great.

  42. Had the Celiac Panel Blood test done 2 years ago. All the levels were very elevated. Doctor confirmed it with and EGD which also was positive for celiac disease. My EGD biopsy showed no villi. Went in because I thought I had gall bladder disease. Bad thing was that I was tested for Gall bladder disease 10 years ago. Had a colonoscopy and an EGD at that time but no biopsy was done in the EGD!! So I probably would have been diagnosed 10 years ago. After going on the gluten free diet…… felt better in less than 4 days with no pain in abdomen. Wonderful feeling!! Sister and her oldest daughter diagnosed because of me. By the way…. have been anemic since 5 years old…… I am now no longer anemic. Have I been celiac my entire life? Could be… I am 48 and feel great.

  43. Endoscopy & Camera pill. Lots of flattened villi & “spots” along intestinal wall. Blood tests were negative, but that was almost two years ago.

  44. Endoscopy & Camera pill. Lots of flattened villi & “spots” along intestinal wall. Blood tests were negative, but that was almost two years ago.

  45. I had a blood test that was negative. I read the book Eating 4 Your Blood Type and because my blood type is ‘O’, I found that my body could not tolerate wheat and gluten. As long as I can remember I have had numerous digestive disorders and never found a solution which got worse over the yrs. So, I eliminated the wheat/free based on my blood type. I have fibromylagia, extreme fatigue, brain fog, joint pains and the list goes on. Everything I ate caused pain, and the inability to digest anything including water which would caused me to choke. Since eliminating wheat and gluten, I have fewer pains and almost no digestive issues unless I inadvertently eat gluten. Additionally, I lost 11 lbs within weeks of not eating gluten, something that I had been unable to do since about 1980, even though I was a gym rat 5-7 days a week, 1-2 hrs. each day for yrs.

  46. I had a blood test that was negative. I read the book Eating 4 Your Blood Type and because my blood type is ‘O’, I found that my body could not tolerate wheat and gluten. As long as I can remember I have had numerous digestive disorders and never found a solution which got worse over the yrs. So, I eliminated the wheat/free based on my blood type. I have fibromylagia, extreme fatigue, brain fog, joint pains and the list goes on. Everything I ate caused pain, and the inability to digest anything including water which would caused me to choke. Since eliminating wheat and gluten, I have fewer pains and almost no digestive issues unless I inadvertently eat gluten. Additionally, I lost 11 lbs within weeks of not eating gluten, something that I had been unable to do since about 1980, even though I was a gym rat 5-7 days a week, 1-2 hrs. each day for yrs.

  47. 7 year old daughter had sky-high anti-body count, so traditional celiac panel to start, then endoscopy with biopsy, all positive for Celiac’s. Stayed on gluten during entire process, as did rest of family, the rest of us were negative but obviously somebody has the gene, if not all of us! The rest of us did not have any digestive issues. Now we are all gluten free. No one is complaining, but no one is raving about how great it is, either. Most noticeable is that daughter’s distended belly is gone.

  48. 7 year old daughter had sky-high anti-body count, so traditional celiac panel to start, then endoscopy with biopsy, all positive for Celiac’s. Stayed on gluten during entire process, as did rest of family, the rest of us were negative but obviously somebody has the gene, if not all of us! The rest of us did not have any digestive issues. Now we are all gluten free. No one is complaining, but no one is raving about how great it is, either. Most noticeable is that daughter’s distended belly is gone.

  49. did anyone have dry mouth? bad breath? Before endoscopy proved celiac, I had heartburn (nexium) I couldn’t swollow. I couldn’t even donate blood because when I did, I was weak and in bed for at least 4 days. Couldn’t keep weight on, I was very thin. I say was because I have since gained at least 10 lbs! I feel much better, MUCH! I notice my mouth isn’t as dry as before and I don’t have bad breath. Is this the case with anyone else?

  50. did anyone have dry mouth? bad breath? Before endoscopy proved celiac, I had heartburn (nexium) I couldn’t swollow. I couldn’t even donate blood because when I did, I was weak and in bed for at least 4 days. Couldn’t keep weight on, I was very thin. I say was because I have since gained at least 10 lbs! I feel much better, MUCH! I notice my mouth isn’t as dry as before and I don’t have bad breath. Is this the case with anyone else?

  51. I had been sick for years with chronic “D”, and some other not so pretty symptoms, but had resigned myself to thinking it was just the way our family was. Then my cousin was diagnosed with Celiac and sent out an email to all his blood relatives to let us all know. He described his symptoms, the various misdiagnoses he had had over the years, and that he was feeling much better after starting on a gluten free diet.

    I told my husband, “I am going to eat gluten free for a couple of weeks to see if I feel better, because all the symptoms my cousin described could have been me. It only took a few days for me to start feeling better. I have been eating a gluten free diet since April 2007, but have not been diagnosed because I do not have health insurance to pay for the test, and I am not willing to eat gluten again so that the testing can take place. When I went to the doctor last winter for a check-up, the first time in 10 years, I told the doc that I was not eating wheat, and why. He said, if you are feeling better, continue what you have been doing. He also said he wished more people would listen to their own bodies. Anyway, that’s my story.

  52. I had been sick for years with chronic “D”, and some other not so pretty symptoms, but had resigned myself to thinking it was just the way our family was. Then my cousin was diagnosed with Celiac and sent out an email to all his blood relatives to let us all know. He described his symptoms, the various misdiagnoses he had had over the years, and that he was feeling much better after starting on a gluten free diet.

    I told my husband, “I am going to eat gluten free for a couple of weeks to see if I feel better, because all the symptoms my cousin described could have been me. It only took a few days for me to start feeling better. I have been eating a gluten free diet since April 2007, but have not been diagnosed because I do not have health insurance to pay for the test, and I am not willing to eat gluten again so that the testing can take place. When I went to the doctor last winter for a check-up, the first time in 10 years, I told the doc that I was not eating wheat, and why. He said, if you are feeling better, continue what you have been doing. He also said he wished more people would listen to their own bodies. Anyway, that’s my story.

  53. Like others, I spent my entire life from infancy being very sick without really know why. No doctor ever came close to giving or suggesting the proper diagnosis. I was extremely symptomatic! I suffered from chronic upset stomach, gas, acute gasteroenteritis, nausea, anemia, mal nutrition, low weight, poor tooth enamel, and chronic illness due to general poor health. During my childhood the doctors thoughts: too much acid intake; they said to cut back on fruits and chile for the gas and it was nomad for children to get stomach viruses…they would periodically check me for child ulcers bc I was a worrier.

    By the time I was older in college I was well adapted to my painful condition and abused pepto. It was during this time doctors told me “no more spicy food.” I studied abroad, where I experienced my top 3 worst stomach illnesses; I lost more than 10 lbs and became grossly over weight. After about half a year I was able to get back to where I was, still on the low weight side.

    Everything I ate, no matter what made me sick; worse, when I was a poor freshman all I ate was ramen & saltines-yeah. Sophomore year I discovered “lactose intolerece” and thought that might be my problem, so I cut it out. I felt the difference in dairy but still felt like crap. A year later my disease was taking a new direction and by now I realized whatever I was experiencing couldn’t be normal, even if the doctors could find a problem, my body was telling me there was!

    I was suffering from untreatable bloating (over 3 months without releif from medicine), and 1-2 episodes of gastroenteritis per month! I asked the university ER doc to look at my chart and tell me what’s up. Their thoughts: poor food safety, expired/spoiled food, poor hygiene, stress. Basically said I was sloppy and filthy. I’m a Virgo. After that I became obsessive ( still am) about this stuff. I took 2 food safety classes, threw food out early… And the last one, stress, I had already figured out all docs at universities use that when they don’t know the answer.

    After two semesters of yoga, therapy, and obsessive food prep habits, same pattern continued. I went back to the doc frustrated with demands! She went over my history, as far back as the study abraod anyway, and decide the answer was there. Her thought: a cyclical bacteria, something I picked up and never properly treated and that’s why it’s repetitive. Commence feicle testing.

    She put me on the TOAST diet! Everytime I was sick I ate bread and drank gatoraide, oh, brother.

    DIAGNOSIS TIME: when I went to drop of my 3rd sample at the lab, the sweet old lady (I’m from Texas) saw how miserable and frustrated and embarrassed I was. She told me to consider Celiac bc her friend’s daughter had it! SHE DIAGNOSED ME FIRST! I paid out of pocket for all my test bc I didn’t have insurance, the doc wanted to shut me up; she said the test found nothing and that maybe I still don’t have my stress under contol!

    After online research, I started to consider a trail diet. Sometime passed and I wanted confirmation before started this unpleasent diet change that would change my whole life- for better and for worse.

    I did the gene swab test to rule it out completely, and a poop test ( not consider official by many) for the antibodies. I had already been on the gluten free diet 2 months and didn’t want inconclusive blood work. The poop wasn’t helpful, but the gene test confirmed that one parent had celiac and one had gluten sensitivity. I cried. Bitter sweet revelation.

    Turns out my least fav foods, pasta, bread, cookies, cake ( I know) are the ones I can’t eat, but that’s no coincidence; children do that, which why it’s important to notice.

    It’s still devastating to think it took 22 years for an explanation, but I’m glad I didn’t give up. I’m the healthiest I’ve ever been, and I’ve saved myself from infertility and all the digestive complications and surgeries that mom has been enduring.

    I was also able to realize I can’t handle meat either. My official diet is gluten free, lactose free, pescetarian! Physically I’m well, but emotionally/mentally/socially every day is still a challenge to get through. This is what a love-hate relationship with food is like.

    I hope this new test is safe, accurate, efficient, and most importantly, affordable! I want all my family to get the test. I hope that celiac awareness will soon reach the level of breast cancer, diabetes, smoking, etc It’s more common!

    1. All, your stories remind me just how much work there still is to do in raising awareness for celiac disease. I’m so glad so many of us are feeling better (every day, more and more of us, and each new diagnosee spreads awareness that much more). Here’s to the day when “endoscopy” is just a word for spelling bees and crossword puzzles.

  54. Like others, I spent my entire life from infancy being very sick without really know why. No doctor ever came close to giving or suggesting the proper diagnosis. I was extremely symptomatic! I suffered from chronic upset stomach, gas, acute gasteroenteritis, nausea, anemia, mal nutrition, low weight, poor tooth enamel, and chronic illness due to general poor health. During my childhood the doctors thoughts: too much acid intake; they said to cut back on fruits and chile for the gas and it was nomad for children to get stomach viruses…they would periodically check me for child ulcers bc I was a worrier.

    By the time I was older in college I was well adapted to my painful condition and abused pepto. It was during this time doctors told me “no more spicy food.” I studied abroad, where I experienced my top 3 worst stomach illnesses; I lost more than 10 lbs and became grossly over weight. After about half a year I was able to get back to where I was, still on the low weight side.

    Everything I ate, no matter what made me sick; worse, when I was a poor freshman all I ate was ramen & saltines-yeah. Sophomore year I discovered “lactose intolerece” and thought that might be my problem, so I cut it out. I felt the difference in dairy but still felt like crap. A year later my disease was taking a new direction and by now I realized whatever I was experiencing couldn’t be normal, even if the doctors could find a problem, my body was telling me there was!

    I was suffering from untreatable bloating (over 3 months without releif from medicine), and 1-2 episodes of gastroenteritis per month! I asked the university ER doc to look at my chart and tell me what’s up. Their thoughts: poor food safety, expired/spoiled food, poor hygiene, stress. Basically said I was sloppy and filthy. I’m a Virgo. After that I became obsessive ( still am) about this stuff. I took 2 food safety classes, threw food out early… And the last one, stress, I had already figured out all docs at universities use that when they don’t know the answer.

    After two semesters of yoga, therapy, and obsessive food prep habits, same pattern continued. I went back to the doc frustrated with demands! She went over my history, as far back as the study abraod anyway, and decide the answer was there. Her thought: a cyclical bacteria, something I picked up and never properly treated and that’s why it’s repetitive. Commence feicle testing.

    She put me on the TOAST diet! Everytime I was sick I ate bread and drank gatoraide, oh, brother.

    DIAGNOSIS TIME: when I went to drop of my 3rd sample at the lab, the sweet old lady (I’m from Texas) saw how miserable and frustrated and embarrassed I was. She told me to consider Celiac bc her friend’s daughter had it! SHE DIAGNOSED ME FIRST! I paid out of pocket for all my test bc I didn’t have insurance, the doc wanted to shut me up; she said the test found nothing and that maybe I still don’t have my stress under contol!

    After online research, I started to consider a trail diet. Sometime passed and I wanted confirmation before started this unpleasent diet change that would change my whole life- for better and for worse.

    I did the gene swab test to rule it out completely, and a poop test ( not consider official by many) for the antibodies. I had already been on the gluten free diet 2 months and didn’t want inconclusive blood work. The poop wasn’t helpful, but the gene test confirmed that one parent had celiac and one had gluten sensitivity. I cried. Bitter sweet revelation.

    Turns out my least fav foods, pasta, bread, cookies, cake ( I know) are the ones I can’t eat, but that’s no coincidence; children do that, which why it’s important to notice.

    It’s still devastating to think it took 22 years for an explanation, but I’m glad I didn’t give up. I’m the healthiest I’ve ever been, and I’ve saved myself from infertility and all the digestive complications and surgeries that mom has been enduring.

    I was also able to realize I can’t handle meat either. My official diet is gluten free, lactose free, pescetarian! Physically I’m well, but emotionally/mentally/socially every day is still a challenge to get through. This is what a love-hate relationship with food is like.

    I hope this new test is safe, accurate, efficient, and most importantly, affordable! I want all my family to get the test. I hope that celiac awareness will soon reach the level of breast cancer, diabetes, smoking, etc It’s more common!

    1. All, your stories remind me just how much work there still is to do in raising awareness for celiac disease. I’m so glad so many of us are feeling better (every day, more and more of us, and each new diagnosee spreads awareness that much more). Here’s to the day when “endoscopy” is just a word for spelling bees and crossword puzzles.

  55. I was having a colonoscopy & mentioned to the doc that I was always feeling bloated & had a lot of gas. I also figured, while I was put out to please do an endoscopy due to a lot of heartburn. While doing the endoscopy, he took 3 or 4 biopsy’s & it was there where the result came back as having Celiac. He wanted to verify it with a blood test. My #’s were so off the charts, it was conclusive, I had Celiac.

  56. I was having a colonoscopy & mentioned to the doc that I was always feeling bloated & had a lot of gas. I also figured, while I was put out to please do an endoscopy due to a lot of heartburn. While doing the endoscopy, he took 3 or 4 biopsy’s & it was there where the result came back as having Celiac. He wanted to verify it with a blood test. My #’s were so off the charts, it was conclusive, I had Celiac.

  57. Here’s the tricky thing with the existing blood test – not sure if it remains a problem with the new test: About 1/100 people are born without the ability to produce a certain type of immune cell, IgA Those who are IgA deficient have none of it They (we) are much more likely to develop Celiac. The two conditions are linked. The existing blood test uses IgA. If your body doesn’t produce any, then the test will always be negative, even if you have Celiac.

    Odd that most doctors don’t know this. If someone has symptoms they should test for IgA at the same time as Celiac or if the test is negative they should screen for IgA before going the next level.

  58. Here’s the tricky thing with the existing blood test – not sure if it remains a problem with the new test: About 1/100 people are born without the ability to produce a certain type of immune cell, IgA Those who are IgA deficient have none of it They (we) are much more likely to develop Celiac. The two conditions are linked. The existing blood test uses IgA. If your body doesn’t produce any, then the test will always be negative, even if you have Celiac.

    Odd that most doctors don’t know this. If someone has symptoms they should test for IgA at the same time as Celiac or if the test is negative they should screen for IgA before going the next level.

  59. In April, I had an episode where for three weeks, I had diarrhea every day, several times a day. No matter what I ate (or so I thought), I’d get another attack. One day, I left my house early to get the oil changed and had to drive back immediately (didn’t make it to the next block) because I had yet another bout. So, I made an appt and went to the doctor’s office. The nurse practioner suggested it could be irritable bowel, something I’d heard before in the last 20 yrs. She offered to give me medication for it, but knows I’m not fond of taking pills, then she said that she wondered if I might have celiac. It seems she’d just read an article about it, so she decided to have me tested. Well, I’m the first patient in their office to come up positive for celiac disease. She referred me to a gastroenterologist, thinking the next step was endoscopy and biopsy, but the blood test was enough for the gastro doc, so they told me to be gluten-free. I’ve been much better since going off gluten, but I’m noticing I’m having some stomach upsets now, though not followed by the dreaded diarrhea. Not sure if my blood test is the same as the one mentioned in this article.

  60. In April, I had an episode where for three weeks, I had diarrhea every day, several times a day. No matter what I ate (or so I thought), I’d get another attack. One day, I left my house early to get the oil changed and had to drive back immediately (didn’t make it to the next block) because I had yet another bout. So, I made an appt and went to the doctor’s office. The nurse practioner suggested it could be irritable bowel, something I’d heard before in the last 20 yrs. She offered to give me medication for it, but knows I’m not fond of taking pills, then she said that she wondered if I might have celiac. It seems she’d just read an article about it, so she decided to have me tested. Well, I’m the first patient in their office to come up positive for celiac disease. She referred me to a gastroenterologist, thinking the next step was endoscopy and biopsy, but the blood test was enough for the gastro doc, so they told me to be gluten-free. I’ve been much better since going off gluten, but I’m noticing I’m having some stomach upsets now, though not followed by the dreaded diarrhea. Not sure if my blood test is the same as the one mentioned in this article.

  61. My story is very similar to many who’ve already commented. For many years I felt like my Dr. was treating me as a hypochondriac, considering the varied symptoms and his seeming unconcern that they might be something more than he thought. But after repeated routine quarterly blood tests showed possible anemia, I was directed to the gastro Dr. for endoscopy to see if I had an ulcer. Gastro Dr. did both colon- and endoscopy. First result showed that I had H-Pylori bacteria, and he casually mentioned that I might be allergic to wheat and he wanted me to take the camera biopsy to see what’s going on. So for two weeks I took the foul tasting antibiotics necessary to get rid of the bacteria; and then swallowed the gigantic camera pill and wore the attached paraphernalia to collect the images. When I went back to the Gastro Dr. for results, he then sent me for a confirming blood test. So it seems, for me, everything was done in reverse. The Dr. never told me anything about numbers on the blood test, just that Celiac was confirmed, and I would have to eat gluten-free.

    I’m happy to say that my digestive symptoms have cleared up, although I’m still concerned about the possibilty of contracting other auto-immune diseases. I already have Thyrod disease. I have 1 sibling who is a diagnosed Celiac with Thyroid disease, and other siblings who scoff at the idea of having Celiac. I have one son undiagnosed (lack of health insurance) who went GF and accepts that he has Celiac, while the other sons have symptoms but also scoff. But all we can do is give family the information, the rest is up to them.

  62. My story is very similar to many who’ve already commented. For many years I felt like my Dr. was treating me as a hypochondriac, considering the varied symptoms and his seeming unconcern that they might be something more than he thought. But after repeated routine quarterly blood tests showed possible anemia, I was directed to the gastro Dr. for endoscopy to see if I had an ulcer. Gastro Dr. did both colon- and endoscopy. First result showed that I had H-Pylori bacteria, and he casually mentioned that I might be allergic to wheat and he wanted me to take the camera biopsy to see what’s going on. So for two weeks I took the foul tasting antibiotics necessary to get rid of the bacteria; and then swallowed the gigantic camera pill and wore the attached paraphernalia to collect the images. When I went back to the Gastro Dr. for results, he then sent me for a confirming blood test. So it seems, for me, everything was done in reverse. The Dr. never told me anything about numbers on the blood test, just that Celiac was confirmed, and I would have to eat gluten-free.

    I’m happy to say that my digestive symptoms have cleared up, although I’m still concerned about the possibilty of contracting other auto-immune diseases. I already have Thyrod disease. I have 1 sibling who is a diagnosed Celiac with Thyroid disease, and other siblings who scoff at the idea of having Celiac. I have one son undiagnosed (lack of health insurance) who went GF and accepts that he has Celiac, while the other sons have symptoms but also scoff. But all we can do is give family the information, the rest is up to them.

  63. I am now 53. At 18 I was diagnosed with IBS, participated in a clinical trial and found to be allergic to the most promising drug to help with my IBS. I was alsot told to go on a high-fiber diet to help, but I couldn’t tolerate the fiber (go figure). I went on with presumed IBS for years being given medication off and on to help with symptoms. Three years ago, I had gastric bypass (which bypassed the duodenum (the part that is most affected by celiac). I began to feel better, but thinking back I think it was probably because of the weight loss. I also noticed that I had a lot of gas after the bypass surgery and it was extremely odorous. Last May, I was having trouble with bloating that wouldn’t go away. So, I made an appt with my GI and went to see him. He thought the bloating was coming from an inability to metabolize artificial sweeteners such as sorbitol, xylitol, etc., which he said was caused by the gastric bypass. As a librarian, I had done some research and told him that I thought my symptoms were indicative of celiac disease. He looked at me and said “I don’t think that’s very likely” with the wave of his hand. Then he said we can go ahead and do the blood test if that would make me feel better. I told him, yes, I do the test. I continued on eating like I had been and still suffering. About 2 weeks later, he called my home and left a message with my husband to have me call him in the morning. He also sent me an email (I work in the same hospital) and said it was very important for me to call him in the morning. When I called him, he said I have bad news. The test we did to test for celiac came back very positive. He asked me to continue eating like I had been and he scheduled me for an endoscopy with biopsy. So, about two weeks later, I had the endoscopy. He told me that day to start the gluten-free diet and come back for a follow-up appointment in about three weeks. So, I went GF. I noticed a huge difference within the first few days. I no longer had this extremely odorous gas problem and my family was a lot happier because I no longer stunk up the house. When I went to the follow-up, he said “you are a complete medical mystery to me”, and explained that my biopsy was completely normal, but my blood test had been extremely positive. We later figured that biopsies are normally done in the duodenum and that was the part that was now bypassed, so that’s why my biopsy came back normal. He asked how I was feeling on the GF diet. I told him that I felt better and that my family had told me that if I ever went off the GF diet they would throw me out. So, we concluded that I must indeed have celiac, but to be a little more sure, we would do the genetic markers. It turned out that I do have one of the markers. So my fate was sealed.

    A few months later I had an outbreak of very painful shingles. My doc prescribed a medication to help with the pain. I began taking it and after a couple of days, I began to notice the gas problem again and I knew I had been extremely careful not to eat anything with gluten and was very careful with cross-contamination. The only thing different was the new med. So, I went searching and found that the generic version I was given did indeed contain an ingredient having gluten. I immediately went off the med and started feeling better within 24 hours.

    Although I am very careful, some cross contamination is inevitable (unless I stay home and never eat out, which I don’t want to do because I now have so much more freedom due to an empty nest and finally able to spend quality time alone with my husband). But I do try to be careful where I eat and I carry my GF diet card with me at all times. I have only had two episodes in the past year and four months.

    One complication I did develop, which I pretty sure was due to celiac, was infertility. I was never able to conceive a child which really bothered me. However, I have been blessed with three children. Two stepdaughters and a son I adopted at birth. I will never know for sure if the celiac was indeed the cause of the infertility, but I in my heart I truly believe it was.

    I consider myself lucky to have been able to steer my doctor in the right direction and be finally diagnosed after spending my entire life dealing with “IBS” and am finally able to enjoy life with my husband.

  64. I am now 53. At 18 I was diagnosed with IBS, participated in a clinical trial and found to be allergic to the most promising drug to help with my IBS. I was alsot told to go on a high-fiber diet to help, but I couldn’t tolerate the fiber (go figure). I went on with presumed IBS for years being given medication off and on to help with symptoms. Three years ago, I had gastric bypass (which bypassed the duodenum (the part that is most affected by celiac). I began to feel better, but thinking back I think it was probably because of the weight loss. I also noticed that I had a lot of gas after the bypass surgery and it was extremely odorous. Last May, I was having trouble with bloating that wouldn’t go away. So, I made an appt with my GI and went to see him. He thought the bloating was coming from an inability to metabolize artificial sweeteners such as sorbitol, xylitol, etc., which he said was caused by the gastric bypass. As a librarian, I had done some research and told him that I thought my symptoms were indicative of celiac disease. He looked at me and said “I don’t think that’s very likely” with the wave of his hand. Then he said we can go ahead and do the blood test if that would make me feel better. I told him, yes, I do the test. I continued on eating like I had been and still suffering. About 2 weeks later, he called my home and left a message with my husband to have me call him in the morning. He also sent me an email (I work in the same hospital) and said it was very important for me to call him in the morning. When I called him, he said I have bad news. The test we did to test for celiac came back very positive. He asked me to continue eating like I had been and he scheduled me for an endoscopy with biopsy. So, about two weeks later, I had the endoscopy. He told me that day to start the gluten-free diet and come back for a follow-up appointment in about three weeks. So, I went GF. I noticed a huge difference within the first few days. I no longer had this extremely odorous gas problem and my family was a lot happier because I no longer stunk up the house. When I went to the follow-up, he said “you are a complete medical mystery to me”, and explained that my biopsy was completely normal, but my blood test had been extremely positive. We later figured that biopsies are normally done in the duodenum and that was the part that was now bypassed, so that’s why my biopsy came back normal. He asked how I was feeling on the GF diet. I told him that I felt better and that my family had told me that if I ever went off the GF diet they would throw me out. So, we concluded that I must indeed have celiac, but to be a little more sure, we would do the genetic markers. It turned out that I do have one of the markers. So my fate was sealed.

    A few months later I had an outbreak of very painful shingles. My doc prescribed a medication to help with the pain. I began taking it and after a couple of days, I began to notice the gas problem again and I knew I had been extremely careful not to eat anything with gluten and was very careful with cross-contamination. The only thing different was the new med. So, I went searching and found that the generic version I was given did indeed contain an ingredient having gluten. I immediately went off the med and started feeling better within 24 hours.

    Although I am very careful, some cross contamination is inevitable (unless I stay home and never eat out, which I don’t want to do because I now have so much more freedom due to an empty nest and finally able to spend quality time alone with my husband). But I do try to be careful where I eat and I carry my GF diet card with me at all times. I have only had two episodes in the past year and four months.

    One complication I did develop, which I pretty sure was due to celiac, was infertility. I was never able to conceive a child which really bothered me. However, I have been blessed with three children. Two stepdaughters and a son I adopted at birth. I will never know for sure if the celiac was indeed the cause of the infertility, but I in my heart I truly believe it was.

    I consider myself lucky to have been able to steer my doctor in the right direction and be finally diagnosed after spending my entire life dealing with “IBS” and am finally able to enjoy life with my husband.

  65. Blood test was negative for both me and my mom. Gene and biopsies were both positive for us. She had many health problems, but I didn’t yet. I only got tested because of her diagnosis. I gave both of my kids blood tests, and they also came out negative. I haven’t really want to put them biopsies. I’m happy to hear the new blood test might be better. Maybe I’ll have them tested again.

  66. Blood test was negative for both me and my mom. Gene and biopsies were both positive for us. She had many health problems, but I didn’t yet. I only got tested because of her diagnosis. I gave both of my kids blood tests, and they also came out negative. I haven’t really want to put them biopsies. I’m happy to hear the new blood test might be better. Maybe I’ll have them tested again.

  67. I was diagnosed by blood work, I have never had any symptoms. I have been eating gluten free for almost 4 years, but becaus I never had symptoms, I am looking for a test that will verfy I actually have Celiac while I am eating gluten free. because if I don’t I want a hoho! Anyone know anythng about that?

  68. I was diagnosed by blood work, I have never had any symptoms. I have been eating gluten free for almost 4 years, but becaus I never had symptoms, I am looking for a test that will verfy I actually have Celiac while I am eating gluten free. because if I don’t I want a hoho! Anyone know anythng about that?

  69. I had lost a lot of weight and was severely anemic. They did a colonoscopy first because my Dad had colon cancer. Then it was through both the blood test and the endoscopy that I learned I have Celiac Disease (the day before Thanksgiving) four years ago. I went out with one last gluten filled meal and started the GF diet the day after Thanksgiving. They did more testing and found that I also have osteoporosis and was Vitamin D deficient.

  70. I had lost a lot of weight and was severely anemic. They did a colonoscopy first because my Dad had colon cancer. Then it was through both the blood test and the endoscopy that I learned I have Celiac Disease (the day before Thanksgiving) four years ago. I went out with one last gluten filled meal and started the GF diet the day after Thanksgiving. They did more testing and found that I also have osteoporosis and was Vitamin D deficient.

  71. Blood test, endoscopy both negative, 22 celiac symptoms,had symptoms all my life, tested positive for gene. Wasn’t eating gluten at the time of tests, just made me too ill. My daughter had multiple behavioral isssues and always complained of tummy ache, her blood test and endoscopy were both negative, wasn’t eating gluten by the time tests were done, made her too ill. She tested positive for gene. Now she’s gf most of her behavior is much improved and no more tummy ache.
    My son was diagnosed with gallstones age 2 1/2 years old. He was having gallbladder attacks. His blood test, endoscopy and gene test all negative. He is gluten free and no more gallbladder attacks, meds to dissolve gallstones so no gallbladder surgery. We all triggered and all 3 of us became very ill within weeks of us each other. It was unnescessary to have gone through all of that. It took us 6 months to gain our health back and a year to gain back the weight we lost. We were all malnutrition. It is very frustrating to know that if the doctors had had more knowledge of this disease they could easily have diagnosed me from my multiple celiac symptoms. We wouldn’t have got so terribly ill and it wouldn’t have been such a long recovery. I got lucky, my gastroenterologist told me that despite my tests all being negative I had the symptoms and genetic profile of someone with celiac disease and so in all liklehood I had celiac disease. He recommended I go on gluten free diet. Doctors like to have positive test results before they recommend gluten free diet. I hope that one day doctors will realise that not all tests are reliable or conclusive and that doctors will work hard to learn about this disease. I also truly believe that there are more undiscovered Celiac Disease genes, my sons celiac symptoms were triggered by gluten and have disappeared now he is gluten free. We are truly grateful to be gluten free.

  72. Blood test, endoscopy both negative, 22 celiac symptoms,had symptoms all my life, tested positive for gene. Wasn’t eating gluten at the time of tests, just made me too ill. My daughter had multiple behavioral isssues and always complained of tummy ache, her blood test and endoscopy were both negative, wasn’t eating gluten by the time tests were done, made her too ill. She tested positive for gene. Now she’s gf most of her behavior is much improved and no more tummy ache.
    My son was diagnosed with gallstones age 2 1/2 years old. He was having gallbladder attacks. His blood test, endoscopy and gene test all negative. He is gluten free and no more gallbladder attacks, meds to dissolve gallstones so no gallbladder surgery. We all triggered and all 3 of us became very ill within weeks of us each other. It was unnescessary to have gone through all of that. It took us 6 months to gain our health back and a year to gain back the weight we lost. We were all malnutrition. It is very frustrating to know that if the doctors had had more knowledge of this disease they could easily have diagnosed me from my multiple celiac symptoms. We wouldn’t have got so terribly ill and it wouldn’t have been such a long recovery. I got lucky, my gastroenterologist told me that despite my tests all being negative I had the symptoms and genetic profile of someone with celiac disease and so in all liklehood I had celiac disease. He recommended I go on gluten free diet. Doctors like to have positive test results before they recommend gluten free diet. I hope that one day doctors will realise that not all tests are reliable or conclusive and that doctors will work hard to learn about this disease. I also truly believe that there are more undiscovered Celiac Disease genes, my sons celiac symptoms were triggered by gluten and have disappeared now he is gluten free. We are truly grateful to be gluten free.

  73. My daughter was sick of some sort or another since she was born whether it be chronic constipation, acid reflux or vomiting everyday for 6wks. When she was 4 dr.’s were trying to rule out things so she has a rectal biopsy and the dr punctured her colon. So, after 2 surgeries and a colostomy bag for 10 wks from a wonderful pediatric surgeon to repair what the first dr. did, A blood test was the source her diagnosis. She has been on a gluten free diet for 18 months now. She is now “thriving” as her pediatrician says. She grew over 4inches in 8 months. She sleeps better and her hair has grown so much in the 18 months since her diagnosis. I didn’t realize the severity of this disease until we changed her diet. She is now a happy, healthy, well adjusted 6 year old!

  74. My daughter was sick of some sort or another since she was born whether it be chronic constipation, acid reflux or vomiting everyday for 6wks. When she was 4 dr.’s were trying to rule out things so she has a rectal biopsy and the dr punctured her colon. So, after 2 surgeries and a colostomy bag for 10 wks from a wonderful pediatric surgeon to repair what the first dr. did, A blood test was the source her diagnosis. She has been on a gluten free diet for 18 months now. She is now “thriving” as her pediatrician says. She grew over 4inches in 8 months. She sleeps better and her hair has grown so much in the 18 months since her diagnosis. I didn’t realize the severity of this disease until we changed her diet. She is now a happy, healthy, well adjusted 6 year old!

  75. The Deamidated Gliaden test has been out now for a couple of years. Phadia is just the latest company to get it approved by the FDA. The most recommended algorithm for diagnosing Celiacs is to do the TTG and Deamidated Gliadin (both IgA & IgG) as well as the total IgA level. If these are positive, then the endoscopy is the final arbiter. The genetic tests point to propensity but not to actual disease and do not indicate severity. Endoscopy is still the gold standard because of the visualization of the destruction of the villi. The algorithm provides the best diagnostic results. You can follow the improvement with the blood tests (decrease in antibody levels) once you go on a gluten free diet.

  76. The Deamidated Gliaden test has been out now for a couple of years. Phadia is just the latest company to get it approved by the FDA. The most recommended algorithm for diagnosing Celiacs is to do the TTG and Deamidated Gliadin (both IgA & IgG) as well as the total IgA level. If these are positive, then the endoscopy is the final arbiter. The genetic tests point to propensity but not to actual disease and do not indicate severity. Endoscopy is still the gold standard because of the visualization of the destruction of the villi. The algorithm provides the best diagnostic results. You can follow the improvement with the blood tests (decrease in antibody levels) once you go on a gluten free diet.

  77. I was diagnosed w/a stool sample. Lots of gluten that wasn’t absorbed into the system. Also had genetic testing done with that and there was the gene for celiac. I’m also Casein intolerant.

  78. I was diagnosed w/a stool sample. Lots of gluten that wasn’t absorbed into the system. Also had genetic testing done with that and there was the gene for celiac. I’m also Casein intolerant.

  79. Blood & stool. Confirmed by scoping 2006. Felt better for about a year and then started having some of the same symptoms-it took four years for a doc to figure out I had a fatty liver too. I was born without a thyroid so my whole life the docs blamed that. It took 26 years for a doc to run a simple test and I am very grateful he did.

    My cousin was neg blood neg endoscope, positive gene, positive colonoscopy. Just started the gf diet.

  80. Blood & stool. Confirmed by scoping 2006. Felt better for about a year and then started having some of the same symptoms-it took four years for a doc to figure out I had a fatty liver too. I was born without a thyroid so my whole life the docs blamed that. It took 26 years for a doc to run a simple test and I am very grateful he did.

    My cousin was neg blood neg endoscope, positive gene, positive colonoscopy. Just started the gf diet.

  81. I was losing weight, ounces a week, bloated, gassy. Endoscopy as well as colonoscopy were done. Endoscopy of course showed from the biopsy, C.D. I also had the blood work done. I stopped eating gluten, and started gaining back weight no stinky gas, definitely feeling better. Three sons who are diabetic, I’m trying to get them to get tested, so far no luck. Our oldest daughter was tested, came back positive, but no symptoms, so she is not eating gf. I’m conscerned she’s doing damage to herself. Youngest daughter tested neg. but has hard to control thyroid. Maybe new blood test would be good.

  82. I was losing weight, ounces a week, bloated, gassy. Endoscopy as well as colonoscopy were done. Endoscopy of course showed from the biopsy, C.D. I also had the blood work done. I stopped eating gluten, and started gaining back weight no stinky gas, definitely feeling better. Three sons who are diabetic, I’m trying to get them to get tested, so far no luck. Our oldest daughter was tested, came back positive, but no symptoms, so she is not eating gf. I’m conscerned she’s doing damage to herself. Youngest daughter tested neg. but has hard to control thyroid. Maybe new blood test would be good.

  83. No diagnosis – common sense realizing I had to be my own health advocate and caregiver. Tired of docs saying IBS and nothing they could do about. it or nothing was wrong with me – like it was in my head! Even when I told them I had constant diarrhea and getting worse year by year. I cut out soda and sugars and white flour first and no changes except I was working on eating healthier. Then I really did an elimination diet and journal. I cut out many things as I realized I had a long list; gluten (including GF oats) and cow dairy (can eat a little goat milk) is the worst, then red/yellow colorants, all the artificial sweeteners, garbanzo beans and flours, Xylitol, etc – so the list has been added to as I cleaned out my toxic gut and got savvy to checking in on my body 30 – 60 min after I eat regularly. I eat no processed foods, a huge percentage of my diet is raw greens, limiting fruit, eating only organic eggs some wild fish and grass fed meats. I dehydrate some raw breads and bake my own treats that are vegan, non-dairy, GF with limited sweeteners and are delicious. So obviously I was sick as a kid alot from eating the wrong foods.

  84. No diagnosis – common sense realizing I had to be my own health advocate and caregiver. Tired of docs saying IBS and nothing they could do about. it or nothing was wrong with me – like it was in my head! Even when I told them I had constant diarrhea and getting worse year by year. I cut out soda and sugars and white flour first and no changes except I was working on eating healthier. Then I really did an elimination diet and journal. I cut out many things as I realized I had a long list; gluten (including GF oats) and cow dairy (can eat a little goat milk) is the worst, then red/yellow colorants, all the artificial sweeteners, garbanzo beans and flours, Xylitol, etc – so the list has been added to as I cleaned out my toxic gut and got savvy to checking in on my body 30 – 60 min after I eat regularly. I eat no processed foods, a huge percentage of my diet is raw greens, limiting fruit, eating only organic eggs some wild fish and grass fed meats. I dehydrate some raw breads and bake my own treats that are vegan, non-dairy, GF with limited sweeteners and are delicious. So obviously I was sick as a kid alot from eating the wrong foods.

  85. Anyone having symptoms of the skin as in severe itching? The itching can be relentless, even in my sleep. It is manifested as a rash diagnosed as plaque psoriasis, but ruled out by biopsies indicating allergic reaction. The skin reaction developes as a rash and also as what appears to be infected pimples, mostly on feet, legs, arms and hands, it did get so bad as to develop on my face and scalp and required prednisone to control it. I have had endoscopy and colonoscopy and ruled out celiac, but no blood test. What is the blood test called? My grandson has celiac and we’ve been told it is genetic.
    Steve

  86. My husband’s mother was diagnosed with Celiac Disease back in the early 70’s which I think is amazing! She was having severe stomach pains along with other symptoms similar to IBS.
    My husband started having similar symptoms in his early 30’s. His doctor concluded it was IBS and put him on medication. He still was not feeling great though. At that time we had no idea that Celiac Disease could be genetic. I suggested to him one day to stop eating gluten for a month and see what happens. It was amazing how much better he felt! He stopped taking the IBS meds after two weeks of being on the GF diet and has been on this diet now for a little over 10 years.

    A couple of years later, my husband’s brother was diagnosed with CD via a biopsy.

    When that happened, I started wondering about my son. He was 12, rather slender, but didn’t complain about any stomach troubles. Knowing though that CD seemed to run in the family, I decided to pay for genetic testing just to see if he even carried the gene. It only required him to spit into a tube. The results came back that he carried a double gene that is associated with CD and had an ultra high chance of either having CD or getting it.

    I then went to his pediatrician with the genentic results and asked for my son to have the blood tests for CD. The doctor had never heard of genetic testing and thought it was rather sillly of me to want my son to have blood drawn “needlessly”. I was stubborn and got the blood draw order I asked for. Blood tests came back positive. He then had an upper endoscopy which confirmed the daignosis of CD.

    He has been gluten free now for a little over a year now and is doing great!

    Three generations now with Celiac Disease.

  87. I was diagnosed after years of being deferred at the office blood drive because my iron was too low. My primary doctor finally sent me to a GI specialist when iron pills didn’t help anymore. He sent me for a for celiac blood test right away. Celiac was confirmed with an endoscopy. After I learned more about celiac I realized that almost every time I had called in sick at work for several years it was for diarrea, just not often enough to call me doctor because I was taking iron so I could donate blood. I haven’t been deferred at the blood drive since I went GF four years ago.

  88. I was diagnosed over 5 years ago through an endoscopy biopsy of my small intestine after blood tests were inconclusive. I have to give my Primary Care Physician a lot of credit- she started digging into my sudden weight loss in Sept and by Jan had diagnosed me with CD. Within 3 days of going on a GF diet, I was better. I felt bionic and was amazed at how aweful I had been feeling. I, also was diagnosed with IBS in college and anemic for 10 years. Within 3 months, my anemia was resolved. I gained the weight back and now people always tell me I look healthy. I think its becasue of how unhealthy I had been. I feel very fortunate to not have suffered long and was able to determine the cause. I just hope that this new test will help to diagnosis others quickly and accurately as well. Thanks!

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2010-2015 Triumph Dining