Testing for Celiac Disease and Gluten Sensitivity
Are you experiencing symptoms that could be related to gluten sensitivity? Have you been tested, or are considering being tested?
Recently, I attended a conference (The Gluten Summit) that shared how mainstream test results for Celiac Disease often give false negative responses. Even if you’ve been tested and the results were negative, please do not give up in pursuing a lifestyle change. Your health and life could depend on it!
Sometimes, the information that we face about our health can seem like a twisted, windy climb that leads to nowhere. We can’t see the end result, and it’s difficult to trust that. From personal experience, I know that the information available about what you might be experiencing can be contradictory and fill you with questions and confusion. I’d like to share some facts about testing for gluten sensitivity to help guide your journey.
My test results said I don’t have Celiac Disease
There are currently two “mainstream” ways to test for Celiac Disease. One is a blood test (there are several variations), and one is a biopsy of the bowel. The blood tests check to see if your body is producing antibodies to gluten, and the biopsy of the bowel checks the condition of the villi in your intestinal track.
The blood tests will only register that your body is producing antibodies if there has already been damage to your intestines, and you are suffering from “leaky gut syndrome” (the damaged condition of your intestinal track that literally opens the gateway to disease forming in your body). If the antibodies don’t register on the test, it doesn’t mean that you don’t have gluten sensitivity; it simply means that the level of antibodies produced is either too low to register, or your intestinal wall isn’t completely damaged yet. In other words, the blood test is not a preventative test. If the blood test indicates you have antibodies already present, you need to react quickly to prevent automimmune disease from taking root.
If you have the bowel test, prepare for an uncomfortable scenario. An endoscopy is used to extract a piece, or several pieces, of your intestinal track. Not only is this uncomfortable, the test is not always accurate. For example, as the pieces of the intestine are examined by a lab, what if those particular piece are perfectly intact, and your physician tells you that you don’t have any issues? As adults, our small and large intestines combined run twenty-five feet or longer. The biopsies do not take a piece from every part of that twenty-five feet!
Many times I have been told, “My test results said I don’t have Celiac Disease, so I don’t need to be gluten free.” That was the same scenario I personally experienced, just a few short years ago. For about ten months, I kept eating gluten. I had reduced it in my diet under doctor’s orders, but I had not eliminated it completely. I didn’t need to, right? The tests said I didn’t have Celiac Disease.
If I hadn’t returned to my doctor in February of 2010, and if he hadn’t convinced me to go gluten free…I don’t think I’d be here today to even share this information! Why do I believe that? There was a study done in 2009 that explains the concern about testing.
What happens to a patient when their test results are negative?
Based on a study done by Dr. Marsh (the doctor who developed the biopsy test to check for Celiac disease), a subset of 286,000 patients that had the biopsy performed were placed into three groups:
- Group 1: Patients with a diagnosis of Celiac disease (the patients had a biopsy test that indicated villous atrophy [destruction of the intestinal villi]); 29,000
- Group 2: Patients with latent Celiac disease (those with positive blood work indicating Celiac disease but they registered a negative biopsy for villous atrophy); 13,000
- Group 3: Patients who did not show any symptoms of Celiac disease and were not diagnosed (but had an increased intraepithelial lympohcyte count, or IEL, indicating inflammation); 3,700
The third group of people fall into a group called “Non-Celiac Gluten Sensitive.” This group is growing at an alarming rate.
What happened twenty years later?
In 2009, there was an article* published in the Journal of the American Medical Association (JAMA) as a follow up to the study done by Dr. Michael Marsh. The study looked at mortality (death) rates in the three groups:
- Those that had a Celiac diagnosis (biopsy indicated Celiac): 39%
- Those with “latent Celiac disease” (positive bloodwork but a negative biopsy): 35%
- Those with non-Celiac gluten sensitivy (negative bloodwork for Celiac test, negative biopsy for Celiac): 72%
*Source: JAMA 2009; 302: 1171-8 Small-Intestinal Histopathology and Mortality Risk in Celiac Disease by Jonas F. Ludvigsson, MD, PhD, Scott M. Montgomery, PhD, Anders Ekbom, MD, PhD, Lena Brandt, BSc, Fredrik Granath, PhD
What does this mean? What should I do?
This study indicates that if you take a blood test and/or a biopsy, and receive results from from your physician that say you don’t suffer from gluten sensitivity, when in actuality you do…you are more likely to lose your life. Period.
Daily, I speak with people who are hurting. From headaches to nausea, fatigue to joint pain, depression to suicidal thoughts. Friends, these are SYMPTOMS that your body is trying to tell you something! Your body will tell you when something is wrong…you just have to be willing to listen to it and to make the necessary dietary changes to get well.
I am grateful to be here to tell you that the above was my story. I didn’t think I had a gluten sensitivity, and neither did my well-trained physician. Thankfully, he identified that despite making many dietary changes, my inflammation rate was still too high (C-reactive protein level), that we needed to reduce it immediately, and that he had ruled out every other possibility of the source of inflammation, and insisted that I go gluten free. Within a couple of weeks, I was on my road to recovery!
So, what do I do now?
If you’ve already been tested:
a) If the results said you have Celiac Disease or gluten sensitivity, you will want to make dietary changes as soon as possible. If you are having trouble getting started or sticking with it, there are lots of free sources available through the internet and local libraries. If you would like help with your personal situation, you can contact us for a consultation. We can provide personal transition coaching, a menu review, or just answer your general questions.
b) If the results said you don’t have Celiac Disease or gluten sensitivity, but you have symptoms that will not go away – try going gluten free for a few weeks and see if it makes a difference. It is vital to remove EVERY source of gluten, grain, and soy from your diet, write down how you feel each day, and trust your body! If you feel better without gluten, you could easily prevent disease from forming by sticking to a true gluten free lifestyle. If you feel that you need to have test results that you can trust, a genetic test from Dr. Peter Osborne will provide guidance about your condition (order at this link and receive free shipping).
If you haven’t been tested:
a) Take the gluten sensitivity quiz (free), and you will receive a recommendation from Dr. Peter Osborne, based on your responses.
b) If the quiz results indicate potential gluten sensitivity, you may want to have the genetic testing done to confirm (order at this link and receive free shipping). If that is not feasible, try a true gluten free lifestyle for a few weeks and see if it makes a difference. Remove every source of gluten, grain, and soy from your diet, write down how you feel each day, and trust your body! If you feel better without gluten, you could easily prevent disease from forming by sticking to a true gluten free lifestyle.
The facts of the study speak for themselves. When I heard the facts, and they validated my own personal experience, I realized that this same scenario is affecting a lot of people. I want you to receive the gift of good health, and feel GREAT! If you are struggling to receive support from your physician, consider sharing this article with them, or finding a supportive endocrinologist or functional medicine practitioner in your area (click here to search by zip code).