I want to do a followup on a recent post I made where I shared some of my own gluten sensitivity journey, including some of my son’s. Toward the middle of this post there is some important information regarding the interpretation of intestinal biopsies that I urge you to read.
I had Sam first tested for celiac disease at age 3, not because he was exhibiting symptoms, but more for a “baseline,” if you will. Sam’s test came back normal and I was thankful for that. I asked his pediatrician when I should have him tested again (not knowing if he carried the gene or not), and his doctor said he would never have to be tested again because his negative blood test meant he would never get it. That statement did not sit well with me as I had read otherwise on numerous occasions, but because I was still in my infancy of learning about the disease that I had been diagnosed with just two years prior, I didn’t have the courage to challenge someone who went to medical school.
Fast forward a couple of years after having gone through a separate medical odyssey with my youngest son (I was convinced Luke had CD because he exhibited several of the “classic” symptoms). I still have nightmares over subjecting him to all the blood tests, at one point it took 4 nurses to hold down an 18 month old baby to get a blood draw (and this mom really should have been sedated)!
It was during this time, that Sam began to develop a real problem with constipation and I would spend hours sitting on the floor of the bathroom trying to comfort him as he strained in agonizing pain. He was also having severe joint pain (a.k.a. “growing pains”) that kept him up at night. I also began to see the canker sores that plagued me as a child. I decided it was time to ask his doctor to run the celiac blood panel again, which he kindly humored me and ordered it.
I vividly remember the days when Luke and Sam’s blood tests came back, Luke’s on November 23 and Sam’s on the 24th (which also happened to be my 35th birthday, which is why I remember). The evening of November 23rd, when the pediatric GI’s office called to say that Luke was negative for celiac disease and that he didn’t even carry the gene for it, I was thrilled but surprised (although his gene tests have a couple of pronounced question marks on them):
POST UPDATE (5/24/2010): I want to share an article by Dr. Scot Lewey, a board certified gastroenterologist, titled “Understanding the Genetics of Gluten Sensitivity,” that I found extremely helpful for better understanding Luke’s gene test.
When the pediatrician’s office called the next day (my birthday of all days) with Sam’s results, I remember answering the phone and the first indication that something was “off,” was the fact it was Dr. C himself on the other end, and not a nurse. When he told me Sam’s blood test was positive (for EmA and tTG antibodies), my heart sank. As soon as we hung up, I called to schedule the biopsy.
Several days after the procedure, Dr. N (Sam’s pediatric GI), called me with the news that his biopsy came back negative. WHAT??
Could it be possible that his blood tests for antiendomysial and anti-tissue transglutaminase antibodies produced “false positive” results?
The following is from the American Celiac Disease Alliance website (emphasis added):
The blood tests can be divided into 2 different types of antibodies: those which are “anti-gluten”, and those that “anti-self”. The “anti-gluten” antibodies are the anti-gliadin IgG and IgA. Ig stands for “immunoglobulin” or “antibody”. The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase IgA. The tissue transglutaminase IgA antibody is often abbreviated as “tTG”. Each antibody test varies widely in its sensitivity and specificity for predicting whether the disease is present in any individual. It must be remembered that NO test in medicine is correct 100% of the time in each person!
There are also several conditions which may yield false negative antibody results. A false negative means that the patient actually has the disease, but the test result is negative. One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency. If a patient has a low total IgA level, the antibodies may be falsely low. This is why I always recommend that a patient have a total IgA level drawn at the same time the antibody testing is done. Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results. To continue reading, click here.
Okay, so false negatives are possible, what about false positives?
Again, the following is from the American Celiac Disease Alliance website:
Since tTG had been first described as the autoantigen of celiac disease in 1997, it has been utilized to develop innovative diagnostic tools. The tTG IgA ELISA test is highly sensitive and specific. The tTG assay correlates well with EMA-IgA and biopsy. However, it represents an improvement over the antiendomysial antibody assay because it inexpensive, rapid, is not a subjective test, and can be performed on a single drop of blood using a dot-blot technique. One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition. TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune disease.
Had it not been for my own biopsy-confirmed diagnosis of celiac disease and dermatitis herpetiformis, I would have jumped for joy at the news Sam’s biopsy came back “negative” and went on my merry way. Because I do have them, and they are genetic, any of the screening tests that come back positive in my children give me great cause for concern. This is why I asked Dr. N point blank, “If this were your child, what would you do?” He kindly said he would put Sam on the GF diet immediately. I was so appreciative of that, because I know he didn’t have to say it. He could have easily said, “come back and see me if Sam starts to develop more symptoms and we can do this process all over again.”
I didn’t want to do that, I didn’t want to keep subjecting him to repeated blood tests and invasive biopsies. I didn’t want to wait until other chronic diseases and conditions took over his little body, the way they have mine. I also didn’t want the stress of always wondering and waiting. Most of all though, I wanted him to live life as a healthy little boy without the anxiety of medical procedures lurking around every corner, the way they did for me from the time I was 2 years old.
I will admit that I have had some fleeting doubts if I am doing the right thing, most notably when Sam goes to a birthday party or some other event where food is involved. To see the look in Sam’s eyes when he has to pull out his own food, kills my heart. I suppose it is this guilt that pushes me over the top when it comes to making gluten-free copycats of popular kid fare (GF Lunchables, Goldfish Crackers, etc.). On some level, I have been trying to make it up to him.
I am now happy to say that my doubts have been erased. I have recently been given an enormous opportunity and the privilege of corresponding via email with Dr. Ron Hoggan, Ed.D., co-author of the book Dangerous Grains and editor of the Journal of Gluten Sensitivity (available on celiac.com). It is a true testament to Ron’s obvious passion for the subject of gluten sensitivity (as well as his kind teacher’s heart), that he actually responded to an email I sent him seeking help to put the pieces of my own gluten sensitivity puzzle together. He could have easily responded with a “buy my book for the answers” statement, but he has gone far and above that! I am not alone in experiencing Dr. Hoggan’s generosity, click here to read about Shirley Braden’s (of Gluten Free Easily) experience with him.
I asked Ron his thoughts on Sam’s conflicting test results and the following were his observations as to why Sam’s biopsy could have comeback negative (my emphasis added to #4):
1. The pathologist who examined them does not follow the Marsh system or one of its derivatives;
2. The biopsies were not well oriented, which makes the pathologist’s job extremely difficult;
3. The pathologist did not count intra-epithelial lymphocytes;
4. The pathologist failed to suggest celiac disease. Some gastros will not interpret the pathologist’s report. If the pathologist does not suggest celiac disease, they just assume that there is no cause to suspect it. Some pathologists, on the other hand, view their job as describing their findings rather than suggesting a diagnosis. I think you can see how this could lead to biopsy results being clearly positive but a breakdown in communication between the pathologist and the gastro might lead to the patient (or his mom) being told that the biopsy was negative.
5. The tTG can sometimes give a false positive but intestinal damage diagnostic for celiac disease does not develop until a few months or even a year or two later.
That was when I knew I had to read his book. As soon as it arrived, I devoured the information. For me, this book helped to connect many dots that have only further given me the confidence, validation, and overall peace of mind that I am doing the right thing for my son.
I really wish I had read this book prior to Sam’s biopsy, so I could have asked more in-depth questions about the “negative” results. Had I not had the courage to ask Dr. N the next question, Sam would probably still be eating gluten today because I would have fallen prey to all the people in my life that have said, “why would you do that to Sam without a definitively positive celiac disease diagnosis?”
The following is taken directly from the book Dangerous Grains, under the section titled “Slow Acceptance and Implementation of New Knowledge,” pages 9 – 10. I have found it to be a great explanation as to why this process can be so confusing, difficult and frustrating.
Not only is the publication and dissemination of new knowledge painfully slow, most health professionals are slow to adopt new ideas from current research. This results in lengthy delays in the application of research to treatment, with patients suffering needlessly and dying prematurely in the interim.
There are a number of reasons for this unfortunate situation. Medical practitioners are often so overworked that many of them simply do not have the time to keep up to date on major medical breakthroughs. Even when doctors can devote some part of their busy days to studying current literature, it is literally impossible for one to keep up with the tens of thousands of international articles published monthly. For example, there are between ten and twenty thousand medical journals and newsletters published annually. The busy doctor must therefore prioritize which articles he will study. Predictably, most journals and reports will be set aside and never read. Studies dealing with the health hazards of grains will most always be among those that are ignored. Many see such articles as highly specialized, esoteric, and impractical. Physicians’ poor training, often a decade or two behind the times, will have created the bias that gluten sensitivity is a trivial, rare aberration. Following the old adage “common diseases occur most commonly,” most practitioners will choose to devote their time to studies and diseases that they believe are more likely to benefit a greater number of their patients. Hence, gluten sensitivity and celiac disease have been disregarded as irrelevant.
The evidence and research that James Braly, M.D. and Ron Hoggan, Ed.D., lay out in Dangerous Grains is compelling. At the back of the book, there is a list of research sources 28 PAGES LONG! There is even a piece on pages 10 – 11 titled “How This Book Can Help You and Your Doctor,” which details how you can obtain copies of the peer-reviewed literature cited in the sources section, since doctors are much more likely to read this type of literature.
The book also covers the following topics:
The history of grains and people
The types of celiac disease and non-celiac gluten sensitivity
Testing for gluten sensitivity in all its forms
Life After Gluten: this section covers everything from dealing with a physical addiction to gluten, informed aftercare, optimal nutrition on a GF diet, dietary supplementation, and dietary dangers.
The Cancer Connection
Gluten, Molecular Mimicry and Autoimmune Disease
Osteoporosis and Gluten
Brain Disorders and Gluten
Bowel Diseases and Gluten: including IBS, Crohn’s, Colitis and more.
Where to from Here? Research, Theories and Treatments
This book is an absolute MUST READ for anyone dealing with celiac disease, non-celiac gluten sensitivity, chronic conditions and illness. I believe wholeheartedly in the information outlined in this book, that I’ve already purchased 5 copies to give to my physicians, and I am going to buy 5 more to giveaway to a few of my fabulous readers
**This giveaway is now closed.**
This giveaway is now closed but you can still purchase a copy of Dangerous Grains on Amazon or at your local bookstore. I cannot recommend it enough and I wish it had been the first book I read after my diagnosis in 2005. It has answered so many questions for me, as well as opening my eyes to other dietary dangers that I was not aware of before.
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