What You Don’t Know Can Hurt You

By Dr. Suzanne P. Nelson, MD, MPH

As a pediatric gastroenterologist – that is, a doctor who takes care of children with digestive problems – it is never easy to tell kids the news: “You have a disease.”

And while I am never happy to tell patients, “You have celiac disease,” part of me is always relieved, because I know the child is going to be okay.  Celiac disease is one of the few diseases I treat that doesn’t require any medication (and therefore, no drug side effects), and which can be managed entirely by diet.  Although, at the moment, doctors cannot cure celiac disease, we do know that a strict, gluten-free diet will enable children with celiac disease to live symptom- free and thrive.

Does this mean that celiac disease is a minor condition, something to be taken lightly?  Absolutely not!  Left untreated, the disease can increase the chances for developing weak bones (osteoporosis, which can cause fractures), small bowel cancer, infertility, and other auto-immune conditions such as insulin-dependent diabetes, and thyroid disease. Untreated celiac disease can also adversely affect a child’s mood, development and growth.  Early diagnosis and treatment are important and can dramatically improve a child’s life.


It is also important to know that if you have celiac disease, you are not alone.  Estimates suggest that about 1% of Americans have the disease.  Current research further suggests that celiac disease is becoming increasingly common.  Many people have the disease, and don’t even know it.

Many Different Symptoms

Many possible symptoms of celiac disease exist yet none of these symptoms occurs only with celiac disease.  Thus, primary care providers can easily overlook the condition.  Sometimes a physician may not request a test for celiac disease because the child is still growing.  Indeed, many of the children I have diagnosed with the disease have shown good growth.  Because the symptoms of celiac disease often develop gradually, parents may not bring their child to be evaluated, or a physician may initially monitor the child’s symptoms and try to reassure the parents that “nothing is wrong.”  Consequently, many parents of children with celiac disease tell me they feel bad because their child was sick for so long before being diagnosed.  A delay in diagnosis is, however, typical.  Hindsight is always 20/20.

There are more than 30 signs and symptoms of celiac disease.  These include constipation, diarrhea, stomachaches, bloating, gas, indigestion, decreased or increased appetite, irritability, nausea and vomiting, and unexplained weight loss. Lactose intolerance can also be present, usually resolving after a gluten-free diet is begun.


Sign and symptoms outside the gastrointestinal tract include depression, anxiety, irritability, hair loss, slow growth (height, weight or both), skin rashes, seizures, numbness or tingling in hands or feet, delayed puberty and missed menstrual periods.

Children at higher risk to develop celiac disease include those with a family history of celiac disease and child with autoimmune thyroiditis, Downs syndrome, Turners syndrome, William syndrome, IgA deficiency, and dermatatitis herpetiformis.  However, most children that I diagnose with celiac disease have none of these risk factors

The bottom line?  One can suffer from celiac disease with major, or minor, symptoms – or with no symptoms at all.  If you are worried that you or your child may have celiac disease – get screened.  What you don’t know can hurt you!!!

Material adapted from Cooking for Your Gluten-Free Teen



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