Tuesday, November 16, 2010

The Case for Gluten Sensitivity Testing

The Problem

     There is widespread agreement that celiac disease and gluten sensitivity are under diagnosed.  Joseph Murray, M.D., from the Mayo Clinic estimates that 1 in 100 people have celiac disease, and most are undiagnosed. Dr. Kenneth Fine, a gastroenterologist at the Intestinal Health Institute, estimates that 30 % of Americans may be gluten sensitive, meaning they are having an autoimmune reaction caused by eating gluten, but they don't meet the gold standard for diagnosis of celiac disease: flattened villi in the small intestine. Combine these estimates with the opinion from Dr. Peter Green, Director of the Celiac Disease Center at Columbia University, that the blood testing for celiac disease is not always definitive. In other words, a negative blood test does not rule out celiac disease.

     Why is this a problem? Celiac disease and gluten sensitivity are slow moving diseases that gradually lead to further complications, such as: intestinal cancer, osteoporosis, anemia, dementia, infertility and an increased risk of development of additional autoimmune diseases, just to name a few. The treatment for the disease is simple: a gluten free diet. The further the disease progresses without intervention, the greater risk a person is for developing complications, some of which can’t be reversed. The earlier the diagnosis, the more likely a person can reverse or prevent symptoms by going on a gluten free diet.

The Stories

     I recently spoke about our experience getting my son diagnosed with gluten sensitivity, and eventually, multiple food sensitivities, publicly for the first time. I spoke to a group of 75 people at our public library, as part of a presentation on food sensitivity and mental illness. You see, my son had a severe case of anxiety for a number of years. He worked with a skilled counselor who used cognitive behavioral therapy with him.  When he was six, after informing us his was one of the worst cases she had seen, she recommended a psychiatric evaluation for possible drug therapy.

     My husband and I, reluctant to take that route, began noticing that his worst days were when he ate junk food, especially with a lot of sugary treats. We began to wonder if there was a connection between his gut and his brain. I started to do my own research, and figured out he had all of the symptoms of a condition known as hypoglycemia, or low blood sugar: sweaty palms, leg pains, headaches, night waking, anxiety, and very irritable when he was hungry. When I approached his pediatrician with this information, I was pretty quickly dismissed.

     We sought help from a naturopathic physician, who explained hypoglycemia can be a symptom of food sensitivity. Testing showed my son was sensitive to wheat, egg, soy and dairy. In light of the wheat sensitivity, the naturopath ordered a celiac blood test, which came back negative. Eventually, my son was examined by Dr. John Green, who told us about a gluten sensitivity test through EnteroLab that is more sensitive than blood testing. My son’s test came back positive. Once we removed gluten from his diet, his rashes went away, and his thyroid function and energy improved. In retrospect, I now understand that the rashes, fussiness, frequent infections, constant night waking and slow growth he suffered as a young child were also attributable to undiagnosed gluten sensitivity.

     The process of telling my story was cathartic. And even though I know our family is not alone in this difficult journey to getting diagnosed with gluten sensitivity, it is still shocking to me how many people go through this, many of whom never get a proper diagnosis because of the lack of knowledge about celiac disease and gluten sensitivity within the medical community. After I told my story, Nadine Grzeskowiak, the 
Gluten Free RN, told her story.

     Nadine was traveling around Oregon working in emergency rooms when she came down with pneumonia. She never felt right after that, and her health began to deteriorate. She sought medical help from multiple doctors, and eventually started doing her own research because nobody could figure out what was wrong with her. After a few years, her hair was falling out, her body was failing, and her doctors gave her only six months to live. She went to a dermatologist who, upon examination, told her she had the symptoms of celiac disease, and ran a blood test to confirm the suspicion. Meanwhile, Nadine went on a gluten free diet, and within a couple of weeks started feeling better. When she went back to the dermatologist to get her test results, she was informed the blood test was negative for celiac disease. The news was initially discouraging, because she wanted a diagnosis.  But after she thought about how much better she felt without gluten, she decided to stick with the gluten free diet. Listening to her speak on stage, you would never guess she had been through such an ordeal. She is healthy now and runs her own business helping people with gluten sensitivity and celiac disease.

     I met a member of the audience, Karen Cormac-Jones, whose son Ted, began complaining of nausea at the age of 9. The nausea soon turned into vomiting and lack of appetite, and Ted weighed a meager 57 pounds. He was put on anti-nausea medications, which had no effect, leaving Ted walking around his house with a bowl to catch his frequent vomit, and sleepless painful nights because of the constant nausea.  A blood test for celiac disease showed his antigliadin IgG antibodies were high, indicating a possible gluten intolerance. Ted had a biopsy of his small intestine to determine if his villi were flattened, the “gold” standard for diagnosis of celiac disease. No flattened villi were found. Shortly after, another doctor diagnosed Ted with H. pylori bacteria, elevated levels of lead and mercury, and compromised immunity. Ted’s H. pylori was treated, yet the nausea remained. Because Ted’s weight was still so low, a gluten free diet was not recommended. Ted eventually got a full work up at the Mayo Clinic, who were unable to give a diagnosis, or even explain Ted’s nausea. Finally, Karen found a doctor who ordered ELISA IgG food allergy testing, which showed Ted was sensitive to 25 different foods. In addition, testing through EnteroLab revealed that Ted was sensitive to gluten. Her journey to diagnosis took 3 years, involved 22 doctors , including pediatricians, an allergist, an eye doctor, gastroenterologists, a neurologist, and eventually a naturopath and acupuncturist. You’ll be glad to know that after going on a gluten free diet, Ted is now a happy, healthy and energetic teenager.

     These stories demonstrate the painful and expensive road that many have to endure to get a proper diagnosis of gluten sensitivity in the United States. It is perplexing to me that in this day and age of advanced technology and innovation that we are overlooking something as incredibly basic as to whether the food we eat could be making us sick. Why is gluten sensitivity testing such a well kept secret when it can help solve health problems in such a drastic way? As a consumer of medical services, I have a lot of trouble with this concept.  Can you imagine the health care dollars we would save if gluten sensitivity testing were routine in people who are at risk? My insurance company covered the cost of the EnteroLab test. I’m sure the insurance companies have figured out that testing saves them money.

Risk Factors and Symptoms

First of all, it’s important to note that one does not have to have gastrointestinal symptoms (bloating, diarrhea, constipation, etc.) to have celiac disease or gluten sensitivity. In fact, it is estimated that the disease is silent in a third of people, with no clinical symptoms.   Second, the disease is genetic, so if your family members have it, you are at risk. It is recommended that relatives of those diagnosed with celiac disease and/or gluten sensitivity be tested.

     Although symptoms vary from person to person, here are some to watch out for: 

     *unexplained iron-deficiency anemia
     *fatigue, weakness or lack of energy
     *delayed growth or onset of puberty
     *bone or joint pain
     *bone loss or osteoporosis
     *depression, anxiety, behavior changes, autism, ADHD/ADD
     *tingling numbness in the hands and feet
     *fertility problems
     *canker sores inside the mouth
     *dental enamel defects
     *an itchy skin rash called dermatitis herpetiformis, or psoriasis
     *recurring digestive discomfort/problems
     *peripheral neuropathy
     *cerebellar ataxia

     Also, a 
recent study suggests people with restless leg syndrome should be screened.

     In addition to the symptoms above, the following autoimmune diseases are associated with celiac disease:

*type 1 diabetes
     *autoimmune thyroid disease
     *rheumatoid arthritis
     *sjogren's disease
     *addison's disease
     *autoimmune liver disease
     *multiple sclerosis
     *systemic lupus erthematosus

     EnteroLab recommends gluten sensitivity testing for anyone who has an autoimmune disease.  

The Test

     The testing through EnteroLab can be ordered online and done in your home.  The genetic testing is done through a cheek swab, and the other testing is done through stool samples.  Our insurance covered the test with a doctor's order, however, no order is necessary to receive the test.  The most comprehensive test, which includes gluten sensitivity, tissue transglutaminase (test for the autoimmune reaction caused by gluten sensitivity), intestinal malabsorption test, genetic testing, and dairy sensitivity testing, costs $369.  Check 
EnteroLab's website for other testing options.

     Many doctors are now using EnteroLab to test for gluten sensitivity.  If yours does not, call EnteroLab and ask for doctors who test in your geographic area.

What are we waiting for?

     Dr. Kenneth Fine, the gastroenterologist behind the EnteroLab test, argues we shouldn't wait until the villi in the small intestine are gone to prescribe a gluten free diet.  By that time, the disease has progressed enough that malabsorption and other complications have started to develop or are already present.  Some people with gluten sensitivity may have damage to other tissues, but not enough flattening of the villi to qualify for a diagnosis of celiac disease under current standards.  Just like doctors test cholesterol levels and recommend dietary counseling to prevent heart disease, gluten sensitivity screening could prevent a myriad of complications from developing, especially in high risk groups.

     Looking back, I realize that the vitiligo I developed when I was six, my slow growth as a child, my borderline anemia which began by 16, the dental enamel defects and recurring sores in my mouth that I had in my 20's, and the joint pain and eventual thyroid disease that was diagnosed in my 30's, were all indicators of disease.  A skilled doctor, especially one that looked at my family history of thyroid disease, type 1 diabetes and rheumatoid arthritis, could have put it together earlier and recommended testing.  That knowledge could have in turn, saved my son from growing up with anxiety and other physical problems he has had to endure.

     I can't change the past, but I can spread the news that many diseases can be prevented through testing and a gluten free diet.  If you are a doctor who cares about the health of his or her patients, why not use gluten sensitivity testing in your practice?  I guarantee, you will develop a loyal following of patients once the word gets out that you are curing disease.

     The bottom line is simple.  There is no risk to getting screened for gluten sensitivity.  There is a significant risk to not getting tested if risk factors are present.  If you, or someone in your family is at risk, what are you waiting for?

     For supporting references and more information about the relationship between autoimmune disease and gluten sensitivity, please visit
 Celiac Disease, Gluten Sensitivity and Autoimmune DiseaseEnterolab's frequently asked questions about gluten sensitivity and Enterolab's Resources and Education page.

Recommended Reading:

Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance.

This post is linked to Fight Back Friday and Monday Mania.


  1. What an interesting post! I really learned a lot. It's so important to nourish ourselves with food that is right for us, and to know as much as we possibly can about our food and our bodies.

  2. Wow, this is amazing. Thanks for sharing. I recently asked my doc to test me and she did for Celiac and Gluten sensativity but, both came back negative. I felt like giving up on this but, now you make me wonder again. I have so many weird symptoms and had felt better after going gluten free for almost a month then, went back on gluten leading up to my test. I have much worse symptoms after going back on gluten so, it seems this could be the issue. I don't know for sure but, am going to share this info with my husband and look into testing for both of us. Thanks again!


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