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Does My Family Need to Test for Celiac Disease?

By Edited Jul 9, 2016 2 4

How Can I Convince my Family to Get Tested for Celiac Disease?

Does My Family Need to Test for Celiac Disease?

Credit: Joe Lewis, flicker.com, license creative commons attribution-sharealike 2.0 generic

The genes for celiac disease are hereditary. That's been scientifically proven, so it's a fact.[1] That means if you have celiac disease, then it's quite likely that others in your immediate family (first or second-degree relatives) do too. The increased risk has a lot of celiacs concerned because we can see other family members suffering with some of the symptoms of gluten intolerance, and yet those family members either won't go to the doctor to get tested, or they don't take a gluten-free diet seriously.  

Over the years, I've heard a lot of justifications. One son in particular has always had a knack for evading the real issue. It was much easier to tell himself that mom was blessed with a wild imagination than it was to consider what I was saying: celiac disease runs in families and it was in his best interest to go get tested. Denial in celiac families runs deep, but my family isn't an isolated case. Such denials are quite common.  

So common, in fact, that many of those with celiac disease have resorted to complaining, nagging, and demanding family members in hopes of convincing their loved ones that they need to get tested for celiac disease. Although it's always a good idea for first and second-degree relatives to see their own doctor once someone in the family has been diagnosed, that isn't likely to happen. Plus, complaining and nagging only create hostile feelings within the family.  

While it's difficult to stand by and watch others suffer needlessly, especially when someone's health is deteriorating, if family members want to attribute their indigestion or joint pain to simple food intolerance, and ignore the obvious implications, there isn't much we can do. Not even in the face of statistics.  


Celiac Disease Statistics  

According to the National Foundation for Celiac Awareness, once someone has been diagnosed, it's estimated that up to 5 to 10-percent of one's family members also have the condition.[1] That's because celiac disease is triggered in those who are genetically predisposed to getting it. Those who carry the family genes. Medical authorities do recommend that family members be tested for celiac disease on a regular basis[2] but be prepared for some -- if not all -- family members to reject that recommendation.  

The figures tossed around on the internet are that 1 in about 133 people worldwide will come down with celiac disease sometime during their lifetime.[3] But that "one" is much more likely to be more prevalent in families. That doesn't mean that a single family member will have celiac disease here and there. It means that the odds go up dramatically enough that several people in one family can have it, while a lot of other families won't be touched by gluten intolerance at all, even though about a third of the population at large carry the genes.[5]  

For first-degree family members (parents and children), the statistics are a whopping 1 in 22.[2] For second-degree family members (aunts, uncles, cousins, nieces, nephews, grandparents, grandchildren, and half-brothers and sisters), the risk is a little bit less. More like 1 in 39.[2] And yet, even with those types of statistics, many family members are still reluctant to believe that their health problems could be adversely affected by something as common place as eating bread. That's what the couple in the following video ran into.

Celiac Disease is Hereditary

But Few Family Members are Willing to Get Tested

Given the seriousness of the situation, and the multiplicity of health problems and additional autoimmune diseases that can result from non-treatment, including death, it's difficult for many celiacs to understand why their families are making different choices than themselves. Rarely is it a case of a lack of education as celiacs tend to be quite vocal when it comes to explaining their situation to their families and relatives. At least, in my experience. It's not uncommon for a celiac to want to make a difference in the lives of their families,[6] so not speaking up rarely happens. 


Why Are Family Members Reluctant to Have Themselves Tested? 

It's more likely for the family member or relative to ignore what is being said because they don't want to face the changes or lifestyle restriction that would come with such a diagnosis. Typical sacrifices are going out for pizza on a whim, enjoying a particular brand of beer, or supporting your local burger joint while out shopping. Giving up wheat bread is huge. Those are sacrifices that many family members are unwilling to make. 

The fact that celiac disease is diagnosed through positive blood tests and a biopsy can also be more than a little off-putting for relatives.[6] Another reason could be that their symptoms differ from yours. Even within the same family, symptoms of celiac disease vary widely. 

For example, my youngest son has neuropathy, migraine headaches, occasional vertigo, and belly aches. Mom gets a belly ache and constipation. My husband gets a skin rash. And I have explosive gastrointestinal problems, skin issues, vertigo, neuropathy, Grave's Disease, hair loss, and lots of neurological problems. In fact, there are over 300 symptoms and conditions associated with celiac disease.[4] That makes a diagnosis extremely difficult to pin down, but that many possibilities also gives family members permission to dismiss the need for testing by simply saying, "I'm fine." 

Damage from Celiac Disease has Occurred by the Time One Sees the Doctor

By the time the symptoms are serious enough for the family member to see the doctor, a lot of damage has already been done. This is particularly true for those who don't have any symptoms because they will put off testing indefinitely. Plus, once they do see a doctor, the average patient waits 10 years or more for a diagnosis, often being told they have irritable bowel syndrome or simply lactose intolerance.  

Credit: Damon Sacks, flickr.com,license CC BY-ND 2.0 generic

In addition, people are definitely afraid of change. There's no doubt about that. And being diagnosed with celiac disease brings a lot of lifestyle changes that are not always pleasant. However, the truth behind the reluctant attitude runs deeper than switching to gluten-free breads and pasta, and maybe going out to eat a little less often. There is a lot of negative media coverage about being gluten intolerant. People don't want to be seen as picky eaters or an obsessive psychotic. They want to be accepted and appreciated, to feel important. They don't want to be made fun of, shunned, and labeled a freak. 

And if you think that I'm exaggerating about the way a lot of people react to those of us with gluten intolerance and celiac disease, I'm not. Even one of my good friends believes I'm obsessive-compulsive when it comes to keeping myself safe. Avoiding the possibility of cross contamination is seen as being picky, unreasonable, and downright crazy. In fact, I've even been accused of having a social phobia. 

The damage that celiac disease causes results in severe malnutrition due to malabsorption. Gluten intolerance can also cause severe neurological disorders, migraine headaches, anemia, and even organ damage. Yet the media continues to ridicule and make fun of those who claim they need to avoid gluten. Although research done in recent years confirms the existence of gluten sensitivity, most people still believe it's a joke. Restaurant owners and servers get tired of the hoops they have to jump through in order to produce a safe gluten-free meal. Families don't want to give up their favorite foods, or the ability to have a pizza delivered at the last minute, even if it means the person diagnosed with celiac disease won't heal. 

Plus, our habitual natures often cause a lot of people to just repeat back what they hear consistently all the time. In our current age, that's "gluten free is a fad." Or "Gluten sensitivity isn't real." 


So What Can We Do? 

Truthfully? Not much. Although the hereditary factor is very real, you can't force family members to take celiac disease or gluten intolerance seriously if they don't want to. The best we can do is state our position and then be a good example of what gluten-free living can be like. That is how I've handled the situation in my own family. 

My youngest son is at the stage where he's chasing from doctor to doctor looking for a diagnosis. It has taken him several years to reach this point, though. He waited until the symptoms grew too intolerable to ignore. After approaching one doctor about getting tested for celiac disease, my son said that the allergy test came back negative. He hasn't had an endoscopy, even though his gastroenterologist wanted to do one after discovering he had colitis and belly aches. 

The problem is that my son believes that celiac disease and gluten allergy are the same thing. He doesn't understand the difference, since both conditions involve the immune system. When I tried to correct the misconception and explain the differences between allergies and an autoimmune response, he stopped listening, so there was really no point in continuing the conversation. He did, however, admit to me a few days ago that he believes he's gluten intolerant. He has noticed that the belly aches start after he has eaten something with wheat. 

In addition to stating your case and then letting it go, look at your own lifestyle habits, and make sure that you are not sitting around complaining, playing the victim, or feeling sorry for yourself. Family members will be watching you, whether you realize it or not, so you don't want to let them see you get depressed. You want to stay as positive as you can. Yeah, it sucks that I can't do many of the things I used to enjoy doing before, such as attend family social events, and I have to limit the time I spend around my friends due to my own level of sensitivity, but not everyone is as sensitive to gluten as I am. So I try to not draw attention to myself. 

Seek Out Great Gluten-Free Foods to Put Family at Ease

Credit: MannaFoodTruck, flickr.com, license CC BY-ND 2.0 generic

Seek out the best gluten-free foods and recipes available, and don't hesitate to share your great finds with family and friends. Invite family members to have dinner or holiday gatherings at your house, so you can show them how tasty and delicious eating completely gluten free can be. While most of my own family refuses to serve only gluten free food for family gatherings, they have never complained or been able to tell the difference between the food I've shared with them and traditional high-gluten recipes.

Today's gluten-free options give you a lot of flexibility to whip up a super party menu that will be memorable as well as tasty, so don't limit yourself to serving a plain broiled chicken breast, a baked potato, and a side of canned green beans. Bring out a roasting pan filled with enchiladas, set up your own salad bar, offer your guests a huge soup pot filled with Pozole and a table full of garnishes, a rich chicken and broccoli Alfredo pasta dish, or a super-easy Oriental Orange Chicken that will rival any Chinese restaurant meal. You can even kick an easy batch of fried rice up a notch by including steamed shrimp, asparagus, or dried fruits. The idea is to show your family just how fun gluten-free eating can be. 


Give Family Members Time to Decide for Themselves 

Most importantly, give your family members the space they need to make up their own mind. If they are making different choices that you would make, if they are full of excuses and justifications for why testing for celiac disease isn't a good idea, you need to accept that and focus on taking charge of your own healthy lifestyle. Not everyone is willing to give up their favorite foods or drinks, stop going to their favorite restaurant, or limit their social life. There comes a time when you just have to respect your family member's choices. 

And who knows. Like my youngest son who is now putting forth an effort to figure out his health issues, that stubborn member of the family you are worried about might surprise you and warm up to the idea of getting tested a lot sooner than you think. 



Jan 14, 2015 1:15pm
This is very interesting thank you for sharing!
Jan 15, 2015 11:52am
You're welcome. Glad to hear you found it interesting.
Mar 10, 2015 2:47pm
I'm really glad you emphasized that there are over 300 signs and symptoms of celiac disease. Some people within a family (as you pointed out) suffer in different ways.

And it's true that if someone waits until their symptoms become serious, a lot of damage has been done by then.

This is such an important message for those diagnosed - so glad it became featured on the homepage.
Mar 11, 2015 12:59pm
Thanks Rose. I really appreciate your feedback.
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  1. "Celiac Disease: Who is at Risk?." National Foundation for Celiac Awareness. 12/12/2014 <Web >
  2. "Genetic Testing." University of Chicago Celiac Disease Center. 12/12/2014 <Web >
  3. "Celiac Disease in Families: Do you have a family member with celiac disease?." National Foundation for Celiac Awareness. 12/12/2014 <Web >
  4. Dr. Stephen Wangen Healthier Without Wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance. Seattle : Innate Health Publishing, 2009.
  5. "Celiac Disease." Genetics Home Reference. 12/12/2014 <Web >
  6. "Celiac Disease: How to Convince Family Members to Test for Celiac." Allergic Living: Allergies, Asthma & Gluten-Free. 12/05/2014. 12/12/2014 <Web >

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