The tests for celiac disease can be confusing to a patient. The first test I had returned a negative result. My doctor was concerned that it was a false negative result so I was tested again a week later (these were blood tests). This test was positive and followed up by a biopsy (which they refer to as the “gold standard”) that confirmed the celiac disease diagnosis.
I don’t have the qualifications to explain all of the tests but I have found several credible websites which explain the tests and the reasons they are done and the possibilities of false negative results.
One site is the American Celiac Disease Alliance, a group of 15 leaders in the celiac community that came together to help convince Congress to require food labels to include information about allergens.
Another resource is The Physician’s Guide to Laboratory Test Selection and Interpretation.
4. I think I have Celiac Disease, but the blood tests are negative. What do I do?
While the blood tests for celiac disease are very good at detecting this condition, false negative and false positive tests do occur. False negative results (i.e normal test in someone with celiac disease) are more common with very mild disease or if you are already on a gluten-free diet. Some patients test negative for celiac disease and turn out years later upon repeat testing to have celiac disease. Repeating your blood test may be an important first step. Some individuals also take advantage of genetic testing to determine whether or not they have certain HLA DQ genes that are necessary for developing celiac disease. If you do not have these HLA DQ genes, your symptoms are likely related to a condition other than celiac disease. The HLA DQ genes associated with celiac disease are present in up to one third of the population, so the tests are only helpful in excluding celiac disease as a diagnosis. Small intestinal biopsy can be considered in some individuals where blood tests were not conclusive in diagnosing celiac disease and your doctor still strongly suspects the presence of Celiac disease. Biopsy specimens can be misread if the tissue is not handled properly or not seen by a pathologist expert in interpreting small intestinal biopsies, so finding a doctor who understands the diagnosis of celiac disease and how the tissue must be handled and interpreted is an important step in seeking help with your symptoms. False positive blood tests (abnormal test in someone who does not have celiac disease) are far more common when testing is used for screening populations with a very low likelihood of having celiac disease. Patients already eating a gluten-free diet may have negative blood tests (serology) if they have been on a gluten-free diet for a few months or more. Biopsy results can also revert to normal on a gluten-free diet. In those persons, testing for celiac disease should be repeated after restarting a gluten containing diet or ingesting a defined amount of gluten for a period of time. Some patients may have a problem with the immune system called IgA deficiency which can cause the blood tests for celiac disease to be normal. Special IgG based tests (e.g. IgG tissue transglutaminase antibody) should be ordered in this case to make sure that the diagnosis is not missed.
Good luck with your tests. Your physician can help you understand this information. Stick to reputable sites if you are searching the internet for help.
Hi I like your blog a lot! I have been mostly wheat free for 2 years or so (stopped eating wheat at the recommendation of my accupuncturist), and have tried for the last 6 months to be as gluten free as possible… am not sure i have celiacs but want to get tested. i don’t have insurance (would it cover it anyways?)…i was wondering if you knew how much testing would cost or where i could find such info.
thanks a lot!
susan
My insurance pays for my tests up to the extent they are covered (deductibles, copays, etc). You need to go a physician who will order the tests. If your physician won’t order it because he doesn’t think you have celiac disease you can try to find another one. You will have to do a gluten challenge-go back on gluten for 2 months for the test to work. You need to build up antibodies against the gluten.
There is a good book that I recommend titled “Celiac Disease: A Hidden Epidemic” by Peter Green, M.D. You can see something about it here:
http://glutenfreekathy.wordpress.com/2007/10/25/depression-forgetfulness-and-irritability-with-celiac-disease/
Good luck.
Hi!, my name’s Carola, I’d like to know if it is possible for a person to have the celiac disease even if she had the intestine biopsy (I mean the part part of the intestine near the stomach) and the doctor said the villis are “normal”. My blood test were normal as well. I have many celiac-related symptoms: diarrhea, muscle cramps, weight loss, irritability, depression, muscle pain…etcetera.
Thank you very much.
Carola
Hi, Carola. I can’t give you a good answer. I know it’s frustrating to be suffering from those problems but I can’t tell you if you have celiac disease. I think I would start by seeing another doctor and letting him know all of the tests that you have had and get his or her opinion.
Had you started a gluten free diet before the biopsy? If you had, your villi may have healed before the biopsy. You may have to go on a gluten challenge and add gluten back to your diet for 2 months before another biopsy. I also wonder why you are still having problems if your villi normal.
I wish you luck and truly hope you get an answer soon.
Best wishes, Kathy
Hi
Over several months I have been tested extensively for a range of Symptoms, primarily presenting as neuropathy, some weakness, and muscle wasting. Whilst the majority have been negative I have had abnormal nerve conduction studies, abnormal muscle biopsy, and abnormally high IgA count in blood tests.
To this point none of the results have been conclusive enough to provide me with a definitive diagnosis.
I started to think about Celiac and gluten intolerance when I read about the extensive range of symptoms experienced.
Prior to noticable peripheral neuropathy symptoms in June this year, I have had approx 2 years of irritable bowel like symptoms with recurring and increasing bouts of both unexplained diaorrhea and constipation.
With my current symptoms I have also lost a lot of weight despite having a healthy appetite (sometimes feel ravished and needing to eat soemthing to feel better), lots of unusual stomach and bowel sounds, lots of flatulance, other GIT problems including frequent (alsmost daily) indegestion and heartburn, odd sensations of lips and tongue (sore, tingling, and sensitive), lips covered in multiple small white spots/blemishes under the skin, huge variety of stool size and colour, often light tan and/or clay like, general malaise, blurring of eyesight.
I asked my doctors to check for celiac and had a blood test. Not sure of the technicalities but gp said of the the 3 to 4 tings they were looking for, all came back negative except for one which was abnormally high. He said in this case it usually means a false positive and has deemed that I do not have gluten intolerance. Should I consider asking for re-test or biopsy?
I have no family history of gluten intol..
Dennis: your symptoms sound a lot like mine were. For what it’s worth, the first time I was tested (blood) it came back negative. I think you should do another test and maybe consider finding a physician who has dealt with celiac disease before. It can be hard to diagnose. Don’t stop eating gluten until you get a definitive diagnosis. Good luck! ~Kathy
Hi, thanks for your blog.
I’m in my 40s and I’ve been battling multiple health problems in the last 18 months, including neuropathy, muscle wasting, weight loss, chronic fatigue, horrendous constipation, bloating, multiple minor infections and a total inability to absorb vitamin D and other nutrients. Despite taking prescription supplements, I seem to be getting worse and worse and my vitamin D levels are now risking my bone health (my doctors suspect osteoporosis). My doctor has tested me for every disease known to man, and I’ve been tested for celiacs (the IgA blood test) about three times. It was negative every time. However, now my symptoms are such that my doctors say there is no other explanation, and perhaps I am deficient in IgA. So in a way, I am hoping for the latest tests to come back positive and worried that they’ll come back negative again. I just want to be well again.
Anna, I’m sorry about your health problems. In the book, “Celiac Disease” by Peter H.R. Green, M.D., he states the the “IgG tissue transglutaminase test is necessary to diagnose celiac disease in IgA deficient individuals, of greater value than IgG antigliadin antibodies.” Make sure you haven’t quit eating gluten before the test. If you have you will need to do a gluten challenge which, according to the book above, means eating about 4 slices of bread a day for a month (this is the arbitrary standard). Good luck Anna.
Hi. I have been sick off and on for the past year. I have IBS-like symptoms along with irritability, muscle cramps, and fatigue. My younger sister has celiac disease and I have had the blood test to check for celiac twice in the past year. Both times coming back negative. I recently had genetic testing done and I have the DQ2 gene. My doctor said that having the gene put me at high risk to develop celiac. Could my blood test results possibly be a false-negative? I have been very sick for the past year and I am just hoping for a cure!
Allison, the best advice I can give you is to ask your doctor. Also, check the site in the above link. Have you stopped eating gluten? That can give you a negative test. Good luck
Have you looked into acth testing? It sounds like to me you are having a problem with your cortisol levels. It can cause all the problems you are describing. Pls look into it.
Kate
Hi, i found this site by accident and wondered if you could help. i have been very ill for the past 13 months and have had 2 colonoscopies, and 4 upper GI in Germany although i live in England. I have not been able to kill the Helocibacter Pylori even after 4 courses of treatment and this little bacterial thing has done all kinds of damage inside. i have Gastritis, Gastric, Peptic and Doudenal Ulcers, and infection if the duodenum and small bowel. I have had bowel cancer removed, a hole in my stomach that will not heal/close, and waste food in my stomach as of august 2009, and food remains and fluid in my stomach as of 29 november 2009. I also have an infection of the terminal ileum and have lost 28 kilo and not eaten for 6 months, Can it get any worse??? YES. i went private as the health care is so bad here now, and in Germany they did all the diagnostics and gave me the reports, but no treatment was given to me when i got back to uk, so he wrote a list of tests and told my GP that i needed treating urgently. Among the teast was a full set of bloods, and one was for Celiac disease. the results came back as 4 as a top score and mine was 4, but the lab had put a comment of”provided the patient has had a diet of 4 slices of breas a day for at least 6 weeks we will count this as negative”, but no one is taking any notice of the fact that at that time i had NOT eaten any bread or anything else but for yoghurts and soup for 5 months.i have all the symptoms on the list except for diorea (as my stomach muscles and vegus nerve are not working and sending the bit i am eating along the normal route, and i wondered whether you thought that it should have actually been a posative??? You wont believe this, but i also have Addisons disease, so i am well fed up of all the poking and prodding, all the reports that get filed aaway, but no treatment, i was due another Upper GI today to see if the Helico was dead but an appointment has not turned up, and it is such an uphill struggle for me. we cannot chenge our doctors easily, as the new doctor does not like ill people using their budget up. I do hope that america does not adopt our system as they will live to regret it. Please give me any thoughts on the Celiac issue if you have any though, i just want it all sorted properly and get my lide back again, hopefully before my 19 year old goes to Afghanistan, it would be so nice for him to go away thinking of the mum he had rather that this sick skinny person I am now. Thank you so very much, Babs <3
I was just tested for Celiac. I have IBS symptoms in addition to canker sores for years, plus asthma, thyroid problems, weight gain of 100 pounds. I don’t understand my test results. Came back negative. I’ve been eating gluten forever. I go back to GI in 5 weeks.
try another test
Hi,
Having read your replies its very reassuring to know that there are others with similar experiences of having negative results, even though the symptoms relate to Coeliac’s Disease. I’ve had a negative blood test and I’m wondering whether to have a repeat test as my GP didn’t ask me about my diet before taking my blood. I’ve been having GI investigations and the usual endoscopies as I’ve had lots of painful abdominal symptoms for the last 3 months and have lost a lot of weight. I’ve tested a variety of gluten free products as well as the gluten products (not surprisingly there’s a significant difference). I’ve not been able to eat much and have been prescribed fortisip (gluten free ) from the gastroenterologist for the last 3 – 4 weeks. I don’t know whether this type of diet has affected my blood test, but prior to the test, I’ve haven’t eaten much at all ! I’d be interested to know what you thought and whether i need to be eating the gold standard of 4 slices of bread a day before the test
Peter, As far as I know you DO need to be eating gluten for the test to be positive if you are making gluten antibodies. That’s what the test does: it finds out if you are making antibodies to gluten. I tested negative on my first blood test and a week later tested positive. My doctor tested me again because he was convinced I had celiac. Then the endoscope test confirmed it. Good luck – Kathy
Hi
I have been sick since having the varicellia vaccination 8 months ago. I have frequent vommiting, fatique, butterfly dermatitis, dirrohea, constipation and nerve pain. I then had a blood test which was positive and quite high for IGA Transglutamine anitbodies and the ANA markers were very high and speckled also (autoimmune markers). This have continued to stay high and I had a biopsy done as my docotr believes i am coeliac. My biopsy came back negative. However, the doctor told me to trial a diet as she really thinks i am and that the biospy can sometimes miss damaged villi, or, my coeliac was triggered by the infection, therefore I havent had it long enough to damage the villi as yet. I have now been trialing a gluten-free diet wich is VERY hard and VERY expensive. I then figured if i am not definaltely a coeliac I will go back on the diet. I havent as yet, but did get a little cross contamination of a bread roll on my meat the other day and 2 hrs later had stomach cramps and vomitting. Does this mean i am a coeliac? I am just not sure about the whole positive blood test but negative gastroscopy? No one else in my family has been diagnosed with this diease. But there is an autoimmunue disase (rheumatoid arthritis) in the family.
Lisa
Hi,
My daughter who is now 10 had a blood test for celiac disease 7 years ago and came up negative. The GI doctor said it was irritable bowel and dismissed her. Over the years the sympotoms have stayed the same and some new ones have occured.
Old symptoms that are still present: occasional stomach cramping, odd colored stool, foul smelling stool, face rash (little tiny pimples), bad breath, gets cavaties easily
New sympotms in the last 6 months to a year: patchy yellow and white teeth, easily bruises, ADHD (without hyperactivity), learning diability (including a low working memory) but is gifted, also started puberty over a year ago but never progressed, weight loss.
My question is….. Even if she had a negative test before could she now have a positive test?
Thanks!
Jaime, Yes, I was tested as negative and then tested positive only a week later. The blood test is one that looks for antibodies to gluten. If you aren’t eating much gluten you may not be making the antibodies.
I am not a doctor, just have studied about celiac disease because I have it. But I feel it is important to find out if your daughter has celiac disease. If she does she is not absorbing nutrients fully and it can affect her bones and other aspects, physically. And it is no fun feeling bad all the time. I would get her tested again and try to find a doctor who is familiar with celiac disease. Try a local chapter of Gluten Intolerance Group or Celiac Disease Foundation or Celiac Sprue Association.
Good Luck, Kathy
Hi, I recently have been sick since getting a injection 8 months ago I have had lots of blood tests and they all came up with High transgluten reading and ana. My doc sent me for biopsy but my vili are normal. She told me sometimes catching it early damage is not yet done to the vili and I could still be coeliac just by blood test. There is none that I know of in the family. I have been on a gluten free diet for 3 months now and feel much better. However if I do splurge on gluten I only get sick if I tend to eat bread products. Does this mean I am more intolerant instead of actual coeliacs? Do I need another blood test once or diet to see if my markers have gone down? I don’t want to stick really hard to the diet if not needed as it is very expensive. I am so confused! Thanks
~Lisa, I feel you need to keep working with your doctor on this. Good luck, Kathy
I have several symptoms of celiac but my blood work also came back negative. I also had an upper endoscopy and it showed that I have duodenal mucosal atrophy but the biopsy was normal. Could I still have celiac? I have GI symptoms along with neuro symptoms and vitamin D deficiency, etc. Thank you
Hi, I’m hoping you can help me. I was diagnosed with Pernicious Anemia about 6 years ago and thought all my other symptoms were due to this condition. I seem to have most of the symptoms of celiac and asked my doc to test me for this. My blood result came back at 5.8 which I was told was normal. I don’t know what the range is and can’t find the information anywhere. I don’t even know what test was done and my doc says it is IBS. My symptoms do not fit with IBS and I’m not sure if I should go back to my doctor as it might look like I’m trying to tell her her job. Thank you
~you can find information in this book by Dr. Peter Green. I hope you find some answers, I know how frustrating it can be to be ill and not know what is causing it.~