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