How does celiac disease work?
Celiac disease is an autoimmune disease – those are diseases in which the body mistakenly attacks itself believing its own tissues or other substances to be ‘foreign invaders’. In the case of someone with celiac disease, anytime they eat even a trace amount of gluten – a protein in wheat, rye, barley, oats and triticale – they set off a chain reaction in which the body actually attacks its own villi. These are small, finger-like projections of the small intestine’s lining that are crucial to absorbing the nutrients from all the foods you eat. Thus, if you have celiac disease and eat gluten, it’s not just that you can’t absorb the nutrients from the wheat (and rye, barley and oat) products you eat – it affects your ability to absorb any nutrients.
What are the symptoms of celiac disease?
Celiac disease can have a very wide range of symptoms – this is one of the difficulties for diagnosis. According to the Mayo Clinic, the most common symptoms are intermittent diarrhea, abdominal pain and bloating – but “sometimes people with celiac disease may have no gastrointestinal symptoms at all.” Other symptoms can include irritability or depression, anemia, upset stomach, joint pain, muscle cramps, skin rashes, mouth sores, dental and bone disorders and neuropathy (tingling in the legs and feet). Additional indications that you’re not properly absorbing the nutrients from the foods you eat may include weight loss, general weakness and fatigue, foul-smelling or grayish stools that may be fatty or oily and, in children, stunted growth.
Okay, sounds bad. How common is celiac disease?
It is estimated that as many as 1 out of every 141 Americans has celiac disease – yet a staggering 83% of those with the disease are either undiagnosed or have been misdiagnosed with some other illness. And the absolute rate of celiac disease is believed to be rising. Celiac disease affects people of all ages, races and socio-economic backgrounds, and tends to run in families.
How is celiac disease treated?
There is only one known treatment for celiac disease: maintaining a strict, life-long gluten-free diet. Much like people with severe food allergies, this means not just passing on the (wheat) bread at your favorite restaurant but avoiding even trace amounts to which you might be exposed through cross-contamination.
You can read our guide to getting started on a gluten-free diet here – but make sure you talk to your doctor about whether you might be at risk for celiac disease before you try and ask them for gluten-free guidelines that are appropriate to your condition. Our guide is intended only to help provide you with general information about some of the cooking and lifestyle challenges experienced by many gluten-free eaters and is in no way intended to provide medical advice or otherwise replace your conversation with your doctor. Moreover, nothing in (or left out of) the guide should be misconstrued as indicating that a given food is safe for you to eat. It is your responsibility to ask your doctor for appropriate guidelines for your particular circumstances.
Can celiac disease lead to other medical conditions?
Yes. Serious ones. Left untreated, celiac disease can lead to malnutrition, loss of calcium and bone density, lactose intolerance, cancer (including intestinal lymphoma and bowel cancer) and neurological complications including seizures and nerve damage.
Can I just try going gluten-free and see if it helps me? How is celiac disease diagnosed?
No! There are lots of reasons that you might feel better if you stop eating gluten – but it’s important to know whether celiac disease is one of them because of the severity of the disease and its potential consequences. And once you remove gluten from your diet, you will change the conditions doctors need in order to confirm or rule out a celiac diagnosis.
The first step in diagnosing celiac disease is a simple blood test to check for elevated levels of certain antibodies indicating that your body thinks gluten is a foreign substance and is trying to get rid of it. To confirm the diagnosis, your doctor may also perform an endoscopy to collect a small sample of your intestinal lining for analysis, and/or have you swallow a pill containing a small camera that will then take pictures of your entire digestive tract. You need to still be eating gluten when these tests are performed: once you remove gluten, your body will no longer be creating the anti-gluten antibodies and your intestinal lining will (over time) heal itself so that the indications of gluten’s damage is masked.
What if I don’t have celiac disease – are there other reactions I could be having to gluten, or is that all just a fad?
The human body is an incredibly complicated piece of machinery, full of mechanical and chemical reactions that we still do not yet fully understand. Scientists recognize that celiac disease is part of a spectrum of immunological and digestive reactions a given individual can have in response to gluten – a spectrum that includes a bucket of symptoms termed "gluten-intolerance" or "gluten-sensitvity", dermatitis hepetiformis (a type of rash), irritable bowel syndrome and neurologic diseases that can include significant psychological effects including, many believe, autistic behaviors. Also, many individuals have an allergic reaction to wheat, which is one of the eight most common food allergens in the U.S.
This is not to say that “gluten is bad” or that everyone who finds that they feel better, lose weight or otherwise benefit from a gluten-free diet are all “gluten-intolerant”. It is true that “going gluten-free” is currently a popular fad, and one that for some people may or may not have any scientific basis. But it is equally true that it’s current popularity should not be misconstrued as evidence that celiac disease is the only scientifically-backed reaction one could have to gluten.
The upshot, as we see it, is that we all need to support continued research into how gluten (and other food triggers) affects the human body and work together to develop new social norms and greater variety in manufactured foods so that more of us can eat together – no matter what our eating requirements may be.
Where can I find more information?
If you have any signs or symptoms that worry you, or think you may be at risk for celiac disease, you should make an appointment to see your doctor. In addition, there are lots of great informational resources on the web to help you learn more about this condition. We've put a few in the side bar to get you started.