Could You Have Celiac Disease?
If you live in a medium to large metropolitan area in the United States, you’ve likely heard about gluten. The major disease associated with gluten intolerance is celiac disease. Celiac is a serious condition that is considered to be the most common lifelong disorder present in the US and Europe.
Described initially in the second century by Arteus of Cappadocia, the disease is most ascribed to Dr. Gee from the late nineteenth century. “Coeliac” came from the Greek word for “abdominal.” The “o” was dropped in the US spelling but Europeans and other countries still spell it as “coeliac” today. The classic presentation of celiac disease was a young child who was very underweight and suffered from abdominal pain, bloating, and diarrhea. Initially the disease was considered quite rare.
Today, celiac disease has a different face. While the above description can still occur, we now know that the disease can present in any age group, with any weight profile, and may or may not include digestive complaints.
Sadly, our poor ability to diagnose the disease (over 95% of those suffering remain undiagnosed) likely stems from the historical description of the disease that, for the most part, no longer holds true today. As an example, I’ve had patients come to me who have begged their doctors to test them for celiac but were refused because they weren’t underweight. Typically these patients were correct and we found that they did indeed suffer from the disease.
Asking what symptoms are associated with celiac disease is truly a loaded question. The disease is associated with over 300 diseases and conditions. However, I have put together a self test that might prove helpful in discovering if celiac is playing a role in your health.
Take the Celiac Disease Self-Test
Check all the symptoms that apply to you.
If you checked 1 to 3 boxes, celiac disease may be playing a role in your health problems.
If you checked 4 to 7 boxes, there is a definite possibility that you are suffering from celiac disease.
If you checked 8 or more boxes, the likelihood is quite strong that celiac disease could be affecting you.
As you can see by the self test, celiac disease can influence many systems of the body. Due to limitations of space I’m unable to include every possible manifestation of celiac disease, but suffice to say that it is known to potentially affect literally every organ and system in the human body.
Liver, thyroid, heart, and brain—they are all potentially damaged from gluten.
What does gluten do to the body?
Gluten is a protein found in the grains wheat, rye, and barley, along with some close cousins of wheat such as couscous, spelt, farro, and bulgur. While no human digests the gluten protein completely, for a percentage of the population (anywhere from one to five percent with increasing age), the protein creates a toxic effect on the body’s immune system resulting in a defensive attack that can damage the lining of the small intestine as well as other organs in the body.
The significance of the damaged intestinal lining is that it not only means a gluten reaction, but its compromised structure results in malabsorption of nutrients. The small intestine is the part of the body that turns food into fuel. When it is damaged, the ability to absorb nutrients ingested from food is dramatically reduced. When the body cannot feed its cells, malfunction and disease will result. This explains, in part, the wide reaching effects of celiac disease.
The other consequence of celiac disease, an autoimmune disease, is that it increases your chances of developing other autoimmune diseases. “Autoimmune” simply means that one’s immune system is attacking one’s own tissues. As mentioned, in celiac disease that attack is occurring at the level of the small intestine. In rheumatoid arthritis, the joints are attacked; in type I diabetes, it is the pancreas that suffers; and in multiple sclerosis, the nervous system is the recipient. There are over 100 different autoimmune diseases but it is critical to understand that much research indicates that a lack of integrity of the small intestine (known as a “leaky gut”) may very well be responsible for the initiation of an autoimmune response, regardless of the organ being attacked. Therefore, it is critical that the gut is healed and the immune system is not continuing to be assaulted by a toxic agent. Gluten is a known root cause of such a scenario, hence the importance of not missing a celiac diagnosis.
When severe damage has occurred to the lining of the small intestine as seen in “classic” celiac disease, the lab test utilized to confirm such damage is an intestinal biopsy. This test has long been hailed as the gold standard of the celiac diagnosis. However, since celiac disease does not always manifest itself in such intestinal damage, often a patient with “non-classic” celiac disease is told they are fine when in fact they have the disease.
Due to the continuing damage that gluten causes, an individual who remains undiagnosed is factually shortening their life due to an increased risk of dying from all causes. It is critical that a strict gluten-free diet is embraced immediately with no cheating. Too often I find that those with celiac have not been properly educated as to the seriousness of their condition and they cheat occasionally, unaware of the consequences of their actions.
The first step for anyone wondering if gluten is an underlying cause of their health issues is getting tested. I wish I could tell you that the testing was highly accurate, but sadly it is not. Some advances have been made in the last several years, but we are still far from a simple black/white, yes/no scenario.
What should you do to get tested? There are some classic celiac blood tests that exist. While not perfect, they are still a good starting point.
- tTG: This stands for tissue transglutaminase, an enzyme that gets manufactured in the blood as a result of tissue damage. When high, this is considered to be a fairly accurate test for the presence of damage to the lining of the small intestine, indicating the classic form of celiac disease. The weakness of this test is that such damage is not always present with celiac disease. I recommend that both the IgA and IgG be tested as a patient with low IgA production can produce a false negative test. (TG3 is for skin, TG6 is for the nervous system.)
- Tissue Biopsy: When the tTG test is high, a tissue biopsy is typically recommended to confirm, by actually looking at a sample of the tissues lining the intestine, that damage has indeed occurred. This test, however, is not highly sensitive. Five or so minuscule samples are taken from an organ that has the surface area of a tennis court. Clearly, one could miss an area that was affected and instead sample a healthy area. It is thought that tissue biopsy, while accurate for a severely advanced case, is far from an early detection procedure.
- EMA: This stands for endomysial antibody and should also be evaluated for IgA and IgG for the best accuracy. When the test is ten times above the normal level, celiac disease is all but guaranteed.
- DGP: This stands for deamidated gliadin peptides. It’s a newer test that is felt to be on par with tTG and EMA in its ability to show damage to the small intestine, with the additional benefit of performing better with patients who have decreased IgA and perhaps better accuracy in children younger than age three.
- AGA: This stands for anti-gliadin antibodies and simply measures the immune system’s negative reaction to the presence of the gluten protein. Obviously, if the protein was well tolerated by the individual, his immune system would not be reacting to it. While this test can certainly be found positive in a person with celiac disease, it also can be positive in an individual suffering from gluten sensitivity, sometimes known as “non-celiac gluten sensitivity.” Therefore, a positive result does not distinguish between the two conditions.
- Comprehensive Gluten Sensitivity and Autoimmunity Test: This is a newer test on the market that is offered only by a private laboratory. It looks at the immune system’s reaction to many parts of the gluten protein versus the single element of the protein that other tests address. Gluten, more correctly “gliadin,” is a very large protein. It is estimated that there are 60 different parts of it that might create a response by the immune system. This test addresses ten of those aspects while standard testing tends to focus on a single aspect of the protein. It also looks at both the IgA and IgG facets of the immune system as mentioned previously. Too often, just testing IgA results in false negatives. Obviously, our poor ability to diagnose celiac disease requires some changes in our testing. Personally, I feel that this newer profile is moving in the right direction.
- 30-Day Gluten Elimination Diet: As we have discussed, no lab test is perfect. Even those that are accurate have the liability of not being able to detect early changes. It’s fine to detect a problem, but when it’s only in some cases and only when extensive damage after years of suffering has occurred, I think you’d agree that we need some more options. The benefits of beginning with lab tests is that if they are positive, you then know for sure that you have celiac disease. However, if you find yourself amidst negative tests with the “gut feeling” that you are gluten intolerant, a 30 day strict elimination diet with an improvement of symptoms is considered a positive test in its own right. It won’t distinguish between celiac disease and gluten sensitivity, but you will at least know that gluten is not a beneficial food for you.
- Genetic Testing: While not inexpensive, there are several benefits to genetic testing. It is the best alternative for the individual who is no longer consuming gluten. Any of the previously mentioned tests are null and void in the presence of a gluten-free diet for longer than two weeks. However, your genes don’t change, so if you carry the gene for celiac disease, this test will show it. Now, when it comes to interpretation, I’m a bit at odds with mainstream medicine. Personally, I feel that if you carry even a single gene for celiac and you feel better on a gluten-free diet, that is enough evidence to remain gluten-free. Others feel that even with the presence of two celiac genes, if one of the previously mentioned traditional tests is not positive, then it’s okay to wait to develop symptoms before adopting a gluten-free diet. Considering that some symptoms (such as developing liver disease, thyroid disease, cancer, and osteoporosis) are all but silent, such advice seems akin to a game of Russian roulette in my opinion. There is online testing available (which requires a simple swab from the inside of the mouth) that will look for the presence of celiac genes and gluten sensitivity genes, therefore a more comprehensive test. One final and undeniable fact to note is that if you carry zero genes for celiac disease, it will be almost impossible for you to develop the condition.
Last year a major consensus was published in BMC Medicine, authored by the top twelve experts in celiac disease across the planet. They summarized their comments with a “four out of five rule” that listed the criteria necessary in order to diagnose celiac disease. They believe that any patient who fits four out of the following five criteria can safely be deemed a celiac:
- Typical symptoms of CD (celiac disease)
- Positivity of serum CD IgA class autoantibodies in high concentration (meaning a positive blood test)
- HLA-DQ2 and/or HLA-DQ8 genotypes (the genes for CD)
- Celiac enteropathy found on small bowel biopsy
- Response to a GFD (gluten-free diet), meaning one feels better on a gluten-free diet
In summary, discovering if you or a family member has celiac disease is extremely important. It is not easy necessarily, but hopefully I’ve given you adequate tools to make the journey as direct and efficient as possible.
Please consult your doctor before implementing any new protocol.
To your good health,
Dr Vikki Petersen, DC, CCN
Nominated “Gluten-Free Doctor of the Year,” Dr. Vikki Petersen has successfully treated thousands of patients, changing their lives for the better. She is a Doctor of Chiropractic, Certified Clinical Nutritionist, internationally published author, and public speaker. Dr. Petersen is co-founder of HealthNOW Medical Center (www.healthnowmedical.com) in Sunnyvale, California. She is the author of The Gluten Effect, a best-seller on the subject of gluten sensitivity and celiac disease.
Reference: Fasano et al. BMC Medicine 2012, 10:13 doi:10.1186/1741-7015-10-13
Spectrum of gluten-related disorders: consensus on new nomenclature and Classification.