Did you know Celiac Disease is inherited?

Even though my diagnosis of Celiac was a surprise to me, I realized that very day that my daughter had it also.  She had been complaining about her stomach hurting since she was a child.  Although we addressed this with her pediatrician and saw several specialists, no one ever mentioned the possibility of her symptoms being Celiac disease.  Sadly, her repetitive misdiagnosis mimics the case of most people’s journey to discovering Celiac disease. It takes an average of average of 6-10 years and 7-10 doctors to get an accurate diagnosis.  A lot has changed in the last 10 years and I hope pediatric doctors are more in-tune to Celiac as a possible diagnosis for not only GI issues but allergies and skin irritations as well.

Does it run in your family?

My mom has passed and cannot be tested, but looking back I am sure my Celiac disease was inherited from her. She had GI problems throughout her life, exhibited many Celiac symptoms and died from liver cancer (untreated Celiac has been linked to a higher risk of cancer). Her father (my grandfather) also had many symptoms that point to Celiac, including severe migraines he could not find adequate treatment for. He passed away prematurely at only 53 years old.

Believe it or not, genetics play a major role in which diseases or sensitivities we all have.  If you have a certain variant of the HLA-DQA1 and HLA-DQB1 genes, you are at a greater risk of developing Celiac disease. Because it’s an inherited trait, first-degree relatives such as parents, children, and siblings of people with Celiac disease have between a 4 – 15% chance of developing it. 

My physician didn’t suggest I speak to my first degree relatives, but he should have.  First degree relatives, a parent, sibling, child have a 1 in 22 chance of also having Celiac.   A close relative such as an aunt/ uncle, grandparent or cousin, is at a slightly increased risk.  I knew my daughter should be tested because of her previous GI symptoms. My son was tested later that same year and thankfully, he does not exhibit lab values to indicate he has active Celiac.  Unfortunately, that doesn’t mean he is in the clear. Only a genetic test would show if he has a predisposition to Celiac or not.  I’ve suggested to him to get tested again if he starts to have any symptoms or even without symptoms, every couple of years or so.  I also contacted my brother and spoke to him about getting tested as well.

Share info with your family

Some relatives might not think it’s a big deal or think (unknowingly) that they don’t have any symptoms. Therefore, it is helpful to provide them with documentation from websites such as The Celiac Disease Foundation, Beyond Celiac, or even The University of Chicago Celiac Disease Center. These organizations have information, videos, and links you can share with your family so they can begin to understand the real advantages of determining whether or not they have Celiac, even without symptoms. The sooner a person is aware of their autoimmune condition and begins following a Gluten Free Diet, the better they can maintain their health and prevent other conditions that lead to poor health.

Someone in your family may need you to be their spark of knowledge to lead them to discover they too, have Celiac.

Try sharing a link

YOU may become the spark, to change your family’s tree.