FAQs: Talking to Your Family Members About Celiac Disease Testing
Get even more insight into talking to your family about celiac disease testing by downloading our free discussion guide, complete with research-tested Dos and Don’ts for having the best conversation possible.
Don’t see your question answered below? Send it to Beyond Celiac so we can add responses here to the most commonly asked questions.
I was just diagnosed. How soon should I have this conversation with my family?
You should have this conversation with your family members as soon as possible. Celiac disease is a serious genetic autoimmune disease and it’s important that it is diagnosed quickly and accurately to minimize the risk of long-term complications. Make sure you have a good understanding of celiac disease before you bring up the topic so that you can best answer questions your family members might have.
I don’t know enough about celiac disease yet to have this conversation with my family. Help!
Don’t worry! There is a lot to learn after a celiac disease diagnosis and most people find that you continue to learn new things even years after diagnosis. To get a handle on the basics, we recommend downloading our free comprehensive resource, Getting Started: A Guide to Celiac Disease & the Gluten-Free Diet.
Why do my relatives need to get tested? Can’t they just go gluten-free and see if it helps?
It’s very important to have an official diagnosis of celiac disease for a lot of reasons. Most importantly, celiac disease is an autoimmune condition. Just like any other autoimmune disease, like multiple sclerosis, type 1 diabetes or lupus, it’s vital to have the support of a knowledgeable medical professional to ensure it is properly managed.
Autoimmune diseases are serious and require strict management to help prevent long-term health consequences:
Gluten is found in places beyond the typical breads and pastas, including many other foods, beverages and even in cosmetics, like lipstick. Because of this, having a registered dietitian to help manage the gluten-free diet is essential to managing this chronic condition. Long-term exposure to even trace amounts of gluten can increase the risk of developing additional serious conditions down the road, like osteoporosis, other autoimmune diseases and even certain cancers.
Management beyond the gluten-free diet:
In addition to proper management of the gluten-free diet, celiac disease also requires lifelong monitoring and follow-up testing to ensure that healing is occurring and that no other issues are happening inside the body.
Experts strongly recommend getting an official diagnosis from a medical provider:
For more on this topic, check out this Q&A with celiac disease expert Dr. Joseph A. Murray of the Celiac Center at the Mayo Clinic and member of the Beyond Celiac Scientific/Medical Advisory Council.
It took me a long time to get diagnosed and I didn’t have a great experience with getting tested. What do experts recommend as the current testing protocol and how should I tell my family to get started?
To get started, your family member can schedule an appointment with their family physician or primary care provider, such as a nurse practitioner, to ask for a celiac disease blood test. If your family member prefers to see a specialist such as a gastroenterologist to discuss celiac disease testing, you may be able to help them find a knowledgeable gastroenterologist. Share this Talking to Your Doctor guide with them – it lists specific tips for talking to their doctor and has information on the specific blood test needed.
You or your family member can also order an at-home testing kit, although these do not provide a diagnosis. You or your family member can bring the test results, which provide an “accurate likelihood [of celiac disease diagnosis] based on a lab analysis of 4 key biomarkers,” into an appointment with your doctor.
Which relatives are at-risk for celiac disease and need to be tested?
Because celiac disease runs in families, all biological relatives have a much higher chance of developing celiac disease than the average person and therefore they need to learn about it. A biological family member is someone related to you by blood and includes children, parents, siblings, half-siblings, grandparents, grandchildren, aunts, uncles, nephews, nieces and cousins.
What do I do if my family just won’t listen to me?
We know that it can be frustrating when a family member is not interested in getting tested for celiac disease. Keep in mind, though, that everyone is different and may need more time to be open to the idea of testing. Being successful in speaking to your family members depends on how you talk about celiac disease and what you say to them about their risk.
As the person diagnosed with celiac disease, you have a responsibility to educate relatives on their risk. Be sure to keep the conversation about them,not solely on your journey. Here’s an example:
Instead of saying, “I have celiac disease so you need to get tested,” try saying, “I have celiac disease and it is genetic, so that means you are at a much higher risk than the average person. I’m telling you this because your health is important and I want you to know the facts.”
In an ideal world, all relatives would immediately be interested and open to family testing. Unfortunately, that’s not always the case. The best you can do is talk to them, tell them the facts and urge them to test. The way you approach the conversation with your family is extremely important in getting your family members to take action, so be sure to download the Beyond Celiac Dos and Don’ts guide.
If your relatives aren’t interested right now, leave the door open for a future conversation. You never know if their feelings on testing will change down the line. If your family member wasn’t open to a conversation initially, be sure to let them come to you should their feelings change. It’s good to be enthusiastic about helping your family members stay healthy, but you want to be careful to not make them turned off to the talk for good.
I’m afraid that I’m going to be considered as a nag. How do I avoid that?
First, know that family members want to hear from you. It is important, however, that you focus on theirhealth and wellness.
Celiac disease is a serious condition and it should not be taken lightly. If you approach celiac disease testing using a serious but informal tone at a time when both you and your family member have the ability to properly focus on the topic, you’ll be more likely to help them see the importance of testing.
A shift in your mindset could help you better share the celiac disease testing message. Celiac disease is nothing to be ashamed of; it is not taboo and you are allowed to talk about it. Do your best to leave the gluten-free diet out of the equation, as it can often be associated with the fad diet. Instead, focus on your family member’s increased risk and the long-term consequences of undiagnosed or misdiagnosed celiac disease.
Where’s the best place to have this conversation with my relative?
Deciding where and how you’ll bring up the conversation is an important first step. Select a time where food won’t be the main focus and when you and your relative won’t have any distractions. Consider familiar places like the kitchen, porch, back yard or other comfortable places at your home or theirs.
Public places can be an option for the conversation as well, but it might be better to have the conversation over a drink like coffee rather than during a meal. By ordering in a restaurant and focusing on the safety of your meal, you could unintentionally shift the focus from celiac disease to the gluten-free diet, which might make your family less receptive to your message. A good rule of thumb is to focus on the disease, not its treatment.
If visiting your relative in person is not an option, have a voice-to-voice conversation over the phone, Skype, FaceTime, etc. Talking through social media, email or other electronic communications will minimize the topic and, as a result, your family member will not take the topic as seriously.
What if I have already talked to my family and they were not open to a conversation about celiac disease testing?
If you’ve already tried to talk to your family, you may have a second chance. Read through the Dos and Don’ts discussion guide and consider revisiting the conversation using research-tested tips to drive the conversation. Be sure to consider family dynamics, personalities and relationships when revisiting the conversation.
It’s important to remember that some people won’t be open to celiac disease testing, regardless of how you approach the conversation. Do your best and give them the information they need to make an informed decision. Remember to keep the conversation framed in a way that shows you have their best interests in mind. While it is true that celiac disease testing is important, people must make their own decisions in the end. If your relative isn’t receptive, leave the door open for another conversation, should your relative change their mind.
I’m a parent of a child with celiac disease. Do these tips apply when talking to my extended relatives about celiac disease testing?
Because you understand the severity of celiac disease, you can help communicate this message to your family members. The tips found in the Dos and Don’ts guidedo apply when talking to your extended family members about their increased risk because of your child’s diagnosis.
If my child is the one diagnosed with celiac disease, should I have my other children tested? Is it better to put my entire family on a gluten-free diet to stay on the safe side?
Siblings of a person diagnosed with celiac disease are perhaps among the most likely to also develop the autoimmune condition. Family members do not need to be on a gluten-free diet if they do not have a celiac disease diagnosis (or another medical condition that requires the elimination of gluten). It’s important to keep in mind that a gluten-free diet is restrictive and often lacks in essential vitamins and nutrients. A gluten-free diet should only be taken on under the direction of a healthcare professional experienced in treating celiac disease.
Some families do, however, decide to keep an entirely gluten-free household to keep those living with celiac disease safe from cross-contact. Ultimately, the decision rests with each individual family. Just be sure of two things: 1.) Do not change from a normal, gluten-containing diet before being tested for celiac disease. 2.) Keep in mind additional nutritional needs that come along with managing a gluten-free diet.
How do I talk about genetic testing and the biopsy?
All people being tested for celiac disease will first begin with the blood test. Since the process begins with a blood test, your family member might not need to know all the ins and outs of genetic testing and the biopsy until the time comes.
If your family does ask about these diagnostic tools, use the below information and your own experience to help explain genetic testing and the biopsy.
The celiac disease blood test tissue transglutaminase (tTG) is highly accurate, but a follow-up biopsy is needed to confirm the diagnosis. Celiac disease is a chronic condition that requires lifelong management and follow-up care and it is important to understand the extent of the damage in the gut. An official diagnosis is needed for many things including, but not limited to, tax deductions for gluten-free food, getting special accommodations for you or your child at school and participating in clinical trials.
Beyond Celiac research found that most family members are not interested in genetic testing as it can only rule out celiac disease; it cannot confirm the diagnosis or determine when, if at all, a person may develop the condition. Up to 40% of Americans carry the celiac disease genes, yet only 2-3% of these people go on to actually develop it. Remember that celiac disease can develop at any time; if a relative’s blood test is negative now, that does not necessarily mean that they won’t test positive in the future. Currently, experts recommend that biological relatives be tested every 2-3 years or sooner if symptoms develop. Genetic testing can come into play if your family member’s blood test is negative. A genetic test can determine if your relative is genetically at-risk and if they need to continue on with regular blood testing.
Genetic testing can also be beneficial to households that have already gone on a gluten-free diet without first being tested for celiac disease. Young children can also benefit from genetic testing since it can help determine whether they need to be monitored for celiac disease over the course of their life. If the genetic test of these people comes back positive, an appointment with a physician knowledgeable of celiac disease should be made for a follow-up conversation.
I’m an active social media user. Who should I share this with online?
It’s very important that you DO NOT start a conversation about family testing with your family via email, social media, or any other digital form. Research from Beyond Celiac shows that family members are more open to the conversation when it is done in a one-on-one, personal way. You can learn more about this through the Dos and Don’ts guide to talking about family testing.
Feel free to share the video with other people you know living with celiac disease – it will help them get the conversation started with their own family members offline. Be sure to use the hashtag #TalkTellTest when you do!
It is important to note that simply sharing the Seriously, Celiac Diseasevideo or its companion educational materials with family members instead of having a personal, one-on-one conversation can prevent relatives from being open to testing .
Where can I send my family member to learn more?
Beyond Celiac has a section of BeyondCeliac.org dedicated to educating your family members on their celiac disease risk and how to talk to their healthcare provider about getting tested. Encourage them to visit www.BeyondCeliac.org/FamilyTesting to learn more.