What is Celiac Disease?
Celiac disease, also known as sprue or coeliac, is an autoimmune disorder that affects the small intestine. First described in the first century CE by the ancient Greeks, this disease is named for the Greek word, “koiliakos” meaning “abdominal” Like all autoimmune diseases, celiac involves an immune response that when triggered goes a bit haywire and destroys part of the very body that it’s supposed to protect. In the case of celiac disease, that trigger is gluten, a protein found in wheat, barley and rye, and the part of the body that gets attacked is the intestine’s villi. The villi are small, finger-like structures that are key to absorbing nutrients from food and are vital to overall health.
There are many misconceptions about celiac disease, and as it appears to become more common, many parents are rightly concerned about whether this disease is affecting their child now, or will in the future. Fortunately, support and information is now more available than ever, and this disorder can be completely controlled through a gluten-free diet.
Did You Know…
- An estimated 1 in 133 Americans—about 3 million people—have celiac disease
- 83 percent of celiac cases are undiagnosed or misdiagnosed as another condition
- Celiac disease can affect anyone and can appear in both children and adults
- The average amount of time it takes to diagnose celiac is four years
The cause of celiac disease is not yet known. As in many autoimmune disorders, it appears to involve a number of factors including genetic predisposition and one or more environmental triggers.
Early on, signs of celiac are abdominal pain (sometimes severe), diarrhea and weight loss. In many cases, however these early symptoms are not always present. That doesn’t mean damage isn’t being done. Because nutrition is vital to every aspect of the human body, just about anything—from the kidneys to the nervous system to the brain—can be affected by celiac disease. In fact, there are more than 300 documented symptoms of celiac disease! After progressing for months to years, and as the intestinal walls inflame and the villi are destroyed, signs of malnourishment begin to appear, often leading to the development of other health issues. Some of the most common health problems caused by celiac disease include kidney stones, anxiety, osteoporosis, thyroid disease, intestinal cancer and infertility.
In infants, typical symptoms of celiac disease include:
- Failure to thrive (weight loss)
- A bloated, swollen belly
- Chronic diarrhea
In children, typical symptoms of celiac are slightly more varied and include:
- Chronic diarrhea or constipation
- Stunted growth
- Fatigue and/or irritability
- Weight loss
- Mental or nervous issues, such as chronic headaches, attention-deficit hyperactivity disorder (ADHD), tingling in the hands and feet, and poor hand-eye coordination
- Kidney stones
If you suspect that you or your child has celiac disease, it’s critical to get an accurate diagnosis from your physician as soon as possible, and before you attempt to cut out gluten from the diet as this will skew the test results. A celiac disease diagnosis is given after a series of blood tests. Below are some of the blood tests that you’ll likely need performed. Note that you must eat gluten in your diet for a minimum of four weeks for the test results to be accurate.
- Anti-tissue transglutaminase antibody (tTG – IgA and IgG): The most accurate and common blood test for celiac disease
- Anti-endomysial antibody (EMA-IgA): Another common blood test for celiac disease, often taken in conjunction with the tTG test.
- Anti-deaminated gliadin peptide (DGP – IgA and IgG): Taken to ensure accuracy of IgA and IgG blood tests.
- Total serum IgA : Taken to rule out a false-negative celiac disease blood test
- Anti-gliadin antibody (AgA – IgG and IgA): Blood test performed on children and infants under 2 years of age.
If the blood tests indicate that gluten antibodies are present—the marker for celiac disease—the diagnosis is then confirmed through an endoscopic small intestine biopsy, which will allow the doctor to look at the intestine’s villi. This biopsy is required to confirm celiac disease, as well as show the amount of damage done to the intestine.
In some cases, a genetic test may also be needed. In particular, the doctor will be looking for the HLA (human leukocyte) gene variations DQ2 and DQ8, both of which are linked to celiac disease. While the presence of these genes don’t mean that celiac disease is inevitable, the absence of these genes will rule it out, as they must be present for this disease to occur.
Because its symptoms vary so widely and involve digestive issues, celiac disease appears very similar to a number of conditions, especially irritable bowel syndrome (IBS), Chron’s disease and gluten sensitivity (which celiac disease is often confused with).
- Crohn’s Disease: an inflammatory bowel disorder that usually affects the intestine
- Irritable bowel syndrome (IBS): a disorder that causes inflammation of the large intestine
- Gluten sensitivity: the inability to digest gluten
It’s important to note that, while they do share similar symptoms, gluten sensitivity and celiac disease are not the same thing. Unlike celiac disease, a gluten intolerance or sensitivity does not involve an immune system response. While there is no test for gluten sensitivity, doctors may diagnose it if a patient has the symptoms of celiac, but doesn’t have any sign of gluten antibodies or intestinal damage.
Unfortunately, there is no cure for celiac disease. The only treatment is a strict adherence to a 100% gluten-free diet. Failure to cut gluten completely, even small amounts from cross-contamination, will result in more damage to the intestines and can undo weeks of healing. Once gluten is completely removed, however, the process of healing can begin and the sufferer’s health will improve. As time goes on, the villi will grow back, allowing the body to receive the nutrients it needs from food. The healing process takes time, however. On average, most people with intestinal damage from celiac disease will need six months to more than two years to recover.
Of course, accidents can and do happen. Sometimes unclear labeling on foods or a well-meaning but unaware friend can cause a bout of “gluten poisoning.” Depending on the person, this can cause no symptoms at all, or cause days of severe pain and “brain fog.” To lower the chances of this happening, experts recommend keeping a bottle of gluten enzymes handy. While they won’t prevent a gluten reaction completely, many people with celiac report that these pills can help reduce damage and discomfort (Remember: even the most potent gluten enzyme tablets aren’t foolproof—people with celiac should never consume gluten on purpose, not even on special occasions).
To prevent accidents like this from happening at all, experts recommend keeping a spotlessly clean kitchen, and having designated gluten-free dishes, appliances and counter space.
Like food allergies and other similar chronic conditions, living with celiac can seem alienating and lonely, especially at first. So many questions will crop up after that positive diagnosis: Can I ever eat out again? Are family barbeques and parties safe? How do I bring up my condition with others? And perhaps most challenging of all: How will I explain this disease and the dangers of gluten to my child with celiac? Fortunately, this condition is becoming more and more well known, and there are numerous helpful organizations, blogs and networks out there to give you the support and education you need. From government websites and nonprofits to blogs and recipe sites, going gluten-free is now an easier and more positive experience than you’d expect. Below are some of our favorites: