Celiac Disease versus Gluten Sensitivity
Celiac Disease (CD) is a genetic disorder of the immune system affecting the lining of the small intestine. When individuals with CD consume gluten (the protein portion of grains like wheat, barley, and rye), the body responds by attacking the villi (small finger-like projections) of the small intestine. The villi are responsible for nutrient absorption. Damage to these structures leads to poor nutrient absorption. In turn, this leads to a variety of health issues.
There are over 300 symptoms associated with CD. Some of the more common symptoms are gastrointestinal upset (diarrhea, constipation, bloating, gas). Others are fatigue, headache, joint pain, depression, inability to concentrate, irritability, mouth sores, tingling or numbness in extremities, and skin rash or irritation. It is common for some individuals with CD to have no outward symptoms at all. The lack of outward symptoms with CD is referred to as “silent celiac”.
All of those symptoms – or lack of them – make CD difficult to diagnose. When symptoms are present, there may be a great deal of similarity between CD and other health issues. Common misdiagnoses are: Irritable Bowel Disorder (including Crohn’s Disease and Ulcerative Colitis), chronic fatigue syndrome, fibromyalgia and depression.
In his book, Gluten Freedom, published in April 2014, Alessio Fasano, MD, founder and director of the Center for Celiac Research at Massachusetts General Hospital, writes about the new diagnostic guidelines for CD. Fasano is quick to point out that there is no single diagnostic, but instead, a collective of criteria that include:
- symptom evaluation (Signs & Symptoms of CD)
- appropriate blood tests
- genetic typing (not always used by all physicians, and not a diagnostic on its own, but used instead to determine genetic predisposition for CD; the presence of genetic markers for CD does not necessarily mean an individual has developed or will develop CD)
- small intestine biopsy*
*The small intestine biopsy is performed via endoscopy. In this procedure, a very small camera attached to a thin flexible tube is inserted into the digestive tract through the mouth. This allows the physician to view the lining of the small intestine to check for damage to the villi. A biopsy (small tissue sample) is performed so the villi can be examined more closely under a microscope. Note, Dr. Fasano writes in Gluten Freedom that intestinal biopsy can be avoided in certain cases such as when symptoms are clearly present, the celiac panel of blood tests are undeniably positive (more than 10 times normal) and the genetic markers are present. This is particularly good news for children who are being tested for CD.
The Celiac Support Association offers an informative overview of these steps on their site.
With symptoms of CD, positive antibody tests for CD, the presence of genetic markers for CD and an intestinal biopsy that indicates damage to the villi of the small intestine, a diagnosis is made. Of course, even after a positive diagnosis is reached, experts like Fasano suggest health care providers evaluate patients for a positive response to the gluten-free diet as well as a positive change in antibody blood tests over time.
Currently, the only treatment for CD is a 100% gluten-free diet. Any amount or form of gluten can damage the small intestine of an individual with CD. Fortunately, there are many resources for gluten-free recipes, as well as an abundance of gluten-free products on the market today.
If you’re new to gluten-free living, be sure to check out my Essentials section for excellent resources to start you on your way!
But what if all the tests are negative and you’re still sick?
Sometimes a person with symptoms similar to those of CD visits their doctor, the appropriate tests for CD are performed but the results are negative. Not so long ago, that meant someone went home with no answers and no help.
That is, thankfully, no longer the case. Researchers now know Non-Celiac Gluten Sensitivity (NCGS) is a very real disease all on its own and can lead to many of the same negative symptoms experienced by those with CD.
In response to an overload of misinformation on the internet and the misinterpretation of scientific research, even by so-called experts, I’ve written about gluten sensitivity here: “Is Gluten Sensitivity Real?“
Non Celiac Gluten Sensitivity
The primary difference between CD and gluten sensitivity is that gluten sensitivity is not a disease of the immune system and does not lead to damage of the small intestine. For individuals who do have gluten sensitivity, there is a reaction when gluten is ingested, typically with symptoms similar to those of CD, but one that involves a different aspect of the immune system, and again, one that does not lead to damage of the small intestine villi.
Research from the Center for Celiac Research reveals gluten sensitivity is in fact a separate clinical condition from CD. It is real, and it is believed to affect about 6% of individuals in the US.
According to Dr. Fasano in Gluten Freedom, until biomarkers for gluten sensitivity are found, the condition is defined as the “clinical condition in which wheat allergy has been ruled out using specific tests, and celiac disease has been ruled out by both the absence of specific autoantibodies and also by an endoscopy showing normal intestinal mucosa.”
Of course, there is much more to both of these conditions, with each individual’s case a unique one. Some have no symptoms of CD and learn they are positive for the disease after a bone density test reveals osteoporosis, a related health issue. Some suffer with ailments like debilitating chronic pain for decades before finding their answer to years of pain. There are others who are fortunate enough to be free from the small intestine damage of CD, but who are so sensitive to gluten that they suffer greatly if even the smallest amount is ingested. Some have neurological symptoms, others battle clinical depression, while still others deal with multiple autoimmune diseases and other health issues like iron deficiency anemia. The list is endless. For each individual, there is a unique story.
Regardless of whether you have CD or gluten sensitivity, I hope you find some of your answers here on the site. Have a look around, enjoy the recipes and remember, this gluten-free lifestyle is one of liberation, not restriction, because it can free us from so many of the health issues we’ve suffered with for so long.
Be well, and be informed.