Nearly everyone with celiac disease has one of two versions of a cellular receptor called the human leukocyte antigen, or H.L.A. These receptors, the thinking goes, naturally increase carriers’ immune response to gluten.
There are two factors when looking at celiac disease — one a protein, another genetic. Celiac disease is an exclusively genetic disease, meaning that in order to have the disease, one must have a genetic predisposition to it. Roughly 30 percent of people with European ancestry carry predisposing genes. Yet more than 95 percent of the carriers tolerate gluten just fine.
We know that an estimated 1 in 133 Americans have celiac disease, of that 1% of the population, it is estimated that 83% of them are undiagnosed or misdiagnosed with other conditions. Not only is celiac disease difficult to diagnose based on the vast array of symptoms associated with the disease, but there are other factors that can make diagnosis very difficult:
1. One of the biggest reasons for lack of diagnosis and misdiagnosis is that testing for celiac disease is not a simple process. Firstly, testing can be expensive and many insurance carriers will not cover the cost. To help diagnose celiac disease, physicians first test blood to measure levels of certain antibodies. These antibodies are: The anti-tissue transglutaminase (tTG), The anti-endomysium(EMA), and The anti-deamidated gliadin peptides (DGP). A positive antibody test suggests that a person might be Celiac, but this is not always considered a conclusive test; a biopsy will be needed to confirm the diagnosis. Note that all of these tests can return a false negative if a person has ceased to ingest gluten for a sufficient amount of time before taking the test. This can be very challenging for someone who has felt dramatic relief by subscribing to a gluten free diet, prior to be officially diagnosed.
2. Another widely-believed reason that celiac disease is grossly under diagnosed is that there are no pharmaceutical treatments for the disease. A gluten free diet in combination with proper ongoing naturopathic supplementation, are the only ways that a person with celiac disease will find recovery. With no drug remedies, celiac disease often gets cast aside by diagnosing physicians, and instead, drugs are prescribed to treat the symptoms of celiac disease instead. The process of treating symptoms (that would most likely resolve on their own if a gluten free diet was adhered to), can go on for a long time before the patient and/or doctor makes a correct diagnosis.
3. Celiac Disease is a genetic condition, but the gene can lie dormant. According to the Mayo Clinic, “Many times, for reasons that are unclear, the disease emerges after some form of trauma - an infection, physical injury, stress of pregnancy, severe stress or surgery”. Many Celiacs will live their life with zero aversion to gluten, and following some kind of physical or emotional trauma (such as a car accident or child birth), will suddenly find that they display symptoms of celiac disease. Not all people with this disease actively have it since birth.
4. The asymptomatic, or ‘silent’ Celiacs make diagnosis difficult. In the landmark prevalence study (provided by the University of Chicago Celiac Disease Center) on celiac disease, investigators determined that 60% of children and 41% of adults diagnosed during the study were asymptomatic.
5. Even though Celiac Disease is genetic, a fist degree relative does not have to have it. Only 1 in 22 people with Celiac Disease have a first-degree relative (father, mother, brother) with the disease. 1 in 39 people have a second-degree relative (aunt, uncle, cousin) with the disease. It can become difficult to obtain a complete family history that reveals whether or not someone is genetically predisposed to celiac disease.
6. Environmental factors triggering celiac disease. Over the past three decades, researchers have made significant headway in identifying both genetic and environmental factors that they believe contribute to celiac disease, and have concluded that celiac disease most likely results from an interaction between the two. Gluten is a well-known environmental factor for celiac disease. Dr. Peter Green of the Celiac Disease Center at Columbia University, believes that the enhanced amounts of gluten in our diets and, especially, the excess exposure to heavily processed forms of gluten may contribute to the increasing rates of celiac disease. There is even speculation that natural vs. cesarean birth could be a contributing factor in the development of celiac disease. This field of research, while vastly growing, is still inconclusive and therefore leaves a big question mark when trying to understand exactly why an individual has celiac disease.
According to a 2009 study, celiac disease touches more than four times the number of people it had in the 1950s. It is also estimated that the celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009). As the medical community and those who are affected by celiac disease, continue to spread awareness of the disease, the demand for gluten free food, better diagnostics and more readily available information, will continue to grow.
Written by The Healthy Celiac for Richard Helfrich.com | content also published on richardhelfrich.com
There are two factors when looking at celiac disease — one a protein, another genetic. Celiac disease is an exclusively genetic disease, meaning that in order to have the disease, one must have a genetic predisposition to it. Roughly 30 percent of people with European ancestry carry predisposing genes. Yet more than 95 percent of the carriers tolerate gluten just fine.
We know that an estimated 1 in 133 Americans have celiac disease, of that 1% of the population, it is estimated that 83% of them are undiagnosed or misdiagnosed with other conditions. Not only is celiac disease difficult to diagnose based on the vast array of symptoms associated with the disease, but there are other factors that can make diagnosis very difficult:
1. One of the biggest reasons for lack of diagnosis and misdiagnosis is that testing for celiac disease is not a simple process. Firstly, testing can be expensive and many insurance carriers will not cover the cost. To help diagnose celiac disease, physicians first test blood to measure levels of certain antibodies. These antibodies are: The anti-tissue transglutaminase (tTG), The anti-endomysium(EMA), and The anti-deamidated gliadin peptides (DGP). A positive antibody test suggests that a person might be Celiac, but this is not always considered a conclusive test; a biopsy will be needed to confirm the diagnosis. Note that all of these tests can return a false negative if a person has ceased to ingest gluten for a sufficient amount of time before taking the test. This can be very challenging for someone who has felt dramatic relief by subscribing to a gluten free diet, prior to be officially diagnosed.
2. Another widely-believed reason that celiac disease is grossly under diagnosed is that there are no pharmaceutical treatments for the disease. A gluten free diet in combination with proper ongoing naturopathic supplementation, are the only ways that a person with celiac disease will find recovery. With no drug remedies, celiac disease often gets cast aside by diagnosing physicians, and instead, drugs are prescribed to treat the symptoms of celiac disease instead. The process of treating symptoms (that would most likely resolve on their own if a gluten free diet was adhered to), can go on for a long time before the patient and/or doctor makes a correct diagnosis.
3. Celiac Disease is a genetic condition, but the gene can lie dormant. According to the Mayo Clinic, “Many times, for reasons that are unclear, the disease emerges after some form of trauma - an infection, physical injury, stress of pregnancy, severe stress or surgery”. Many Celiacs will live their life with zero aversion to gluten, and following some kind of physical or emotional trauma (such as a car accident or child birth), will suddenly find that they display symptoms of celiac disease. Not all people with this disease actively have it since birth.
4. The asymptomatic, or ‘silent’ Celiacs make diagnosis difficult. In the landmark prevalence study (provided by the University of Chicago Celiac Disease Center) on celiac disease, investigators determined that 60% of children and 41% of adults diagnosed during the study were asymptomatic.
5. Even though Celiac Disease is genetic, a fist degree relative does not have to have it. Only 1 in 22 people with Celiac Disease have a first-degree relative (father, mother, brother) with the disease. 1 in 39 people have a second-degree relative (aunt, uncle, cousin) with the disease. It can become difficult to obtain a complete family history that reveals whether or not someone is genetically predisposed to celiac disease.
6. Environmental factors triggering celiac disease. Over the past three decades, researchers have made significant headway in identifying both genetic and environmental factors that they believe contribute to celiac disease, and have concluded that celiac disease most likely results from an interaction between the two. Gluten is a well-known environmental factor for celiac disease. Dr. Peter Green of the Celiac Disease Center at Columbia University, believes that the enhanced amounts of gluten in our diets and, especially, the excess exposure to heavily processed forms of gluten may contribute to the increasing rates of celiac disease. There is even speculation that natural vs. cesarean birth could be a contributing factor in the development of celiac disease. This field of research, while vastly growing, is still inconclusive and therefore leaves a big question mark when trying to understand exactly why an individual has celiac disease.
According to a 2009 study, celiac disease touches more than four times the number of people it had in the 1950s. It is also estimated that the celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009). As the medical community and those who are affected by celiac disease, continue to spread awareness of the disease, the demand for gluten free food, better diagnostics and more readily available information, will continue to grow.
Written by The Healthy Celiac for Richard Helfrich.com | content also published on richardhelfrich.com
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