Should I Share My Celiac Diagnosis? from

Should I Share My Celiac Diagnosis?

In Gluten-Free Living by HaT0 Comments

Finding out you have celiac disease can be scary. Telling others about it can be just as nerve-wracking!
Unless you’re a person who likes to tell your family, friends, or even strangers all your business, talking about health issues can be stressful. 
One question most gluten-free newbies ends up asking themselves is, “Should I tell people I’m gluten-free?” And if the answer is yes, then whom and when should you tell? 

Based on our own experience, we’ve come to the concise, clear, definitive answer: “It depends.”
Sharing your diagnosis with blood relatives is a smart idea. After all, celiac disease is genetic. Just like you’d want to know that heart disease or kidney failure runs in your family, your family members deserve to know that celiac disease runs in theirs. You may even discover that another family member is silently suffering from celiac symptoms, perhaps without any idea that a gluten-free diet would offer relief.
When Heidi was diagnosed with celiac disease, we quickly decided that we should tell our immediate families right away—it was early November, and hiding a gluten-free lifestyle until Thanksgiving day could be awkward. (“Sorry, Mom, but I can’t eat your homemade rolls—I gave up all gluten two weeks ago.”) With extended family, we made a point of starting to spread the word within a few weeks. Over time, we may still find a few loose ends. If you live close to family and have meals together regularly, sharing soon is probably a priority. For family that lives farther away, we still encourage sharing sooner rather than later, but it’s definitely OK to give yourself a little time to learn what celiac disease is (and find something you can eat for breakfast tomorrow morning.)
Sharing your diagnosis with friends and acquaintances can be a smart idea too.

The Celiac Conversation

Do you know that conversation that we have with other people all the time? It goes like this:
“How are you doing?”
“Good.” (Or “well,” “fine,” “OK.” Take your pick.)
Then we usually switch parts and have the same dialog all over again.
If you’re casually greeting a stranger as your paths cross, you may want to leave it at just that. But, if you’re starting a real conversation with a friend or acquaintance, this is perhaps your best (and most natural) chance to share your celiac diagnosis. For example,
“How are you doing?”
“I’m doing OK. I was just diagnosed with celiac disease, so I’m trying to figure out my new gluten-free diet.”
Some people are already really good at this, volunteering interesting or important details from their lives with little prompting. For Heidi, sometimes it felt a little awkward to bring up her celiac diagnosis and gluten-free diet, but the results were incredible. We couldn’t believe how many people had a relative or friend with celiac disease or gluten sensitivity and could suggest helpful resources or connections. We found that in the beginning it was most natural to tell friends and acquaintances as we saw them and talked with them in person. As time went on, we felt more ready to make a more general announcement (such as sharing on Taft’s blog——and his Facebook page). Now we’re sharing with everyone who wants to know on Red Checkered Tablecloth! Find a sharing style that works best for you and take it at your own speed. 
Sorry, no easy route here. What we can say is that in our experience, telling others about celiac disease was totally the right decision! Listed below are some reasons why.

Our Positive Experiences with Sharing Heidi’s Celiac Diagnosis

  • It immediately released Heidi from having to eat “social foods” that could hurt her. If you have celiac disease and you’ve been eating gluten socially, CUT IT OUT. You wouldn’t expect someone with a peanut allergy to eat peanut butter “so they don’t offend someone,” right? Well, in a less dramatic but just as serious way, you shouldn’t be expected to eat gluten.
  • We found out about family and friends who were eating gluten free and could point us in the right direction. Taft has an aunt who’s eaten gluten free for health reasons, and he never knew it. A family in our Mormon congregation ended up telling us about our favorite new grocery outlet and offered gluten-free lifestyle tips. Another friend introduced us to his sister’s gluten-free website, Meaningful Eats. We love making several of her recipes now, especially this Skillet Southwestern Chicken & Quinoa.
  • Our family members gained valuable and important health information. (That doesn’t mean they were excited, since Heidi’s close relatives had to decide if they would be tested for celiac disease as well.) Since celiac disease is genetic, your siblings, parents, children, and other close blood relatives are also at risk. Like heart disease or other issues influenced by genes, they need to know it’s something they should be on the lookout for.
  • We learned how to explain celiac disease to others. Often, when we’ve told someone that Heidi has celiac disease, they say, “oh,” then look a little puzzled. We’ve learned how to explain celiac disease with a thirty-second elevator pitch: “Celiac disease is an autoimmune disorder—it means Heidi can’t eat gluten, so nothing with wheat, rye or barley. Eating gluten causes her body to fight the gluten, and it ends up wrecking her digestive system.”
  • We helped make celiac disease a little easier for other celiacs. Sharing your story raises celiac awareness. There are lots of people—possibly including you not so long ago—who don’t know what celiac disease is. By sharing your experience with others, you’re helping every other celiac individual out there feel a little more understood.
Switching to a gluten-free diet, especially if you need to worry about cross contamination, can make social situations more difficult. Participating becomes harder—perhaps because you struggle with feeling excluded or because you struggle with feeling that you’re creating a burden for others. Our experience is that being open about celiac disease helps reduce the overall stress.
If you’re nervous about telling others, hopefully the list above helps. Unfortunately, sooner or later you’ll meet someone who doesn’t get it. When you mention that you’re gluten free, they’ll go off about how “gluten isn’t really bad for you,” or make snide remarks about how it’s “just a fad.” In our experience, such people are rare, but they do exist. Sometimes, the best thing you can do is just walk away. Most of the time though, simply explaining what celiac disease is goes a long way toward understanding.
How, then, do you explain celiac disease to someone? You can always use our “elevator pitch” above, or simply paraphrase
“When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.”
We couldn’t have put it better. 
Not everyone will have the same experience, but there’s a good chance you’ll make some really helpful connections when you’re honest about your new eating lifestyle. At the end of the day, take heart! Most people, with a little help, will understand your situation and respect it. Telling others about your celiac diagnosis can be great, even when it’s scary.
So what’s your story? Comment below and let us know!
P.S. This post is specific to celiac disease. If you’re senstive to gluten but don’t have an autoimmune reaction, adjust our suggestions to fit your own dietary needs. Everybody’s tolerance level is a little different. Still, sharing your gluten sensitivity with others will likely have a net positive effect! 🙂

Leave a Comment