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Talk to Your Family About Celiac Disease Testing

Help Keep Your Family Members Healthy.

Ask Them To Get Tested For Celiac Disease.


NFCA Printable Guide for talking to your family about celiac diseaseYou have been diagnosed with celiac disease. After going gluten-free, you are on the road to restoring health and reclaiming your life.

But, did you know that your family members are at risk for celiac disease? It is critical that all first and second-degree relatives get tested for celiac disease, even if they are not experiencing any symptoms.

Those family members not experiencing symptoms may not understand that they could actually have the disease. They may not recognize their own risk for developing celiac disease, either. What’s more, they may not comprehend the potential health risks of undiagnosed celiac disease.

You can make a difference that saves their lives.

Talk to your untested family members and tell them the facts.


Who is at risk for celiac disease?

  • 1 in 22 first-degree family members (parent, child, sibling) and 1 in 39 second-degree family members (aunt, uncle, niece, nephew, cousin, grandparent, grandchild and half-sibling) are at risk for celiac disease. Learn more about Celiac in Families »
  • Your risk may double if your brother or sister has celiac disease.
  • An estimated 1 in 10 individuals with Type 1 diabetes in the U.S. have celiac disease.
  • Celiac disease affects 1 out of every 133 Americans.

    Learn about other celiac disease risk factors »

What are the signs and symptoms of celiac disease?

  • A 2012 survey found that 35% of people at risk for celiac disease had no reason to suspect that the symptoms they were experiencing were due to undiagnosed celiac disease.
  • Classic symptoms include diarrhea, weight loss or growth failure and anemia.
  • Non-classic symptoms include constipation, abdominal pain, and foul smelling and bulky stools.
  • Other symptoms include rash, unexplained infertility, fatigue, headaches and nutritional deficiencies.

What are the consequences of untreated celiac disease?

Left untreated, undiagnosed celiac disease can increase your risk of other problems:

  • Osteoporosis
  • Infertility
  • Thyroid disease
  • Even certain cancers like lymphoma

Your role: Informing family members


As an individual or the parent of a child with celiac disease, you have an important role in talking to your family members about celiac disease testing. Here's why:

Personal risk information is easy to ignore.

With so much health information in the news each day, it’s easy to stop listening. This is especially true when someone feels perfectly healthy and is not aware of symptoms.

You give celiac disease a face to go along with it.

Your diagnosis of celiac disease makes it personal for your relatives. Your experience and advice is hard to ignore. In a 2012 study, 64% of those with a diagnosed family member agreed or strongly agreed that they would get tested for celiac disease if a family member asked them to.

Untested at-risk family members are difficult to reach.

Without understanding the signs, symptoms and risk of celiac disease, getting your untested family member’s attention is difficult. You play a key role in getting them the information they need to keep themselves healthy.

Getting tested is easy. You can lead the way.

Tell your story. Explain to your untested family members that a simple blood test is the first step to diagnosis. An intestinal biopsy may be required as well. Remind them to remain on a diet containing gluten until after testing. To start, your untested family members need to ask for a IgA-tTG along with a total IgA level.

  • Most major health insurers cover the cost of testing.
  • Tell your relatives to contact their primary care provider about getting tested. A primary care provider can be a family medicine doctor, an internist or an Ob-Gyn.
  • If they do not have a primary care provider, suggest that they contact their insurance company to find one. Many insurance companies offer a “Doctor Finder” tool. Family and friends can also help provide referrals for a trusted medical provider

Genetic testing is another way to rule out celiac disease and may be a good option for at risk or high risk children, or at-risk or high-risk people already on the gluten-free diet.

Download this Printable Guide
Download this Printable Guide: Talking to Your Family About Celiac Disease Testing

BIDMC and Harvard Medical School
This resource was created by Claudia Dolphin, MA, as part of the Applied Learning Experience, Master’s in Health Communication program at Emerson College. Educational guidance was provided by the National Foundation for Celiac Awareness and the Celiac Center at Beth Israel Deaconess Medical Center The assistance of Kristin Voorhees, MA, and Daniel Leffler, MD, MS, is gratefully acknowledged.Visit www.CeliacCentral.org, www.BIDMC.org/celiaccenter and www.CeliacNow.org.
 



 
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