Celiac Disease: All in the Family

June 25, 2013 by Amy Leger | G+ Amy Leger

Oh the great things you get from your family: funky toes, early gray hair, bad eyes, crooked teeth…They are all things we learn to live with (or fix with hair dye, braces and glasses). And as much as families may not want to hear this, if you have celiac disease in the family there is a good chance you or others could also have it.

In my family here’s how the story goes. My daughter, Emma was diagnosed with celiac at 15 months old. Shortly thereafter, I was told my great aunt (on my dad’s side) had celiac and had lived with it for about 40 years prior to her diagnosis. Fast forward 8 years and suddenly my brother was diagnosed with it (in retrospect we should have been more onto it with his symptoms of massive fatigue and unexplained liver disease). And now my dad is gluten free. Doctors always tested him for celiac when he’s been gluten free (despite our asking them to wait until he was on gluten again) so the results haven’t been accurate. The symptoms he had are now improving.

Yep. When my daughter was diagnosed I had never even heard of celiac. Now three of my closest family members have it. It is no surprise I suppose. According to the Center for Celiac Research, 1 in 133 Americans have celiac disease (about 97% are undiagnosed). The chances of a person having celiac disease increases exponentially when there is a family history: 1 in 22 for first-degree relatives (parents, siblings) and 1 in 39 for second degree relatives (uncles, cousins). I am sure if you recommended they be tested for celiac disease they would instantly tell you they don’t have stomach troubles or diarrhea so they don’t need to get tested. But the reality is, only 35% of folks diagnosed with celiac disease presented with the “tell-tale” diarrhea.

Celiac Disease Symptoms

So what are some of those other symptoms? They run the gamut. Because your small intestine isn’t absorbing the nutrients it needs to be healthy, the symptoms of celiac disease can manifest themselves in many different ways according to the Mayo Clinic:

anemia
loss of bone density, osteoporosis
joint pain
acid reflux/heartburn
diarrhea
stomach pain
tingling in the hands and feet
weight loss or weight gain
headaches

A survey conducted by The Savvy Celiac nearly five years ago, found 25% of those who participated had a what you might consider less common symptoms, including respiratory problems.

If you need further proof to convince your family members to get tested, a 2011 study on family genetics and celiac disease had researchers calling for family member testing reporting, “…screening of first-degree relatives of known celiac patients is beneficial and may improve the quality of life of those people who have positive serologies.” So for Dad who always needs to go to the bathroom after every meal, “You know…Dad– that’s just what he does”; or the sister who has had difficulties getting pregnant and is about to head into invitro fertilization, or the nephew with bad teeth and constant canker sores. There may be an answer– in celiac disease.

Getting Tested for Celiac

The first step for your family member is the blood test. It is simple! The University of Chicago Celiac Disease Center has a fact sheet on the blood testing and what they look for. If your doctor won’t test you for it or tells you that you don’t have celiac because of whatever reason, find another doctor. I know people who had to convince their doctor to give them them test and then later have the opportunity to tell them “I told you so” because the results came back positive for celiac.

I know some people don’t want to know that they have a disease. Frankly, it is scary. But by getting this diagnosed, it will help them feel better and could prevent another, even worse condition like osteoporosis, autoimmune disorders and cancer.

Good luck and be sure to let us know how it goes with your family!

Tags: celiac disease, diagnosis, disease, genetic, symptoms, test