Marie Mekosh

May is Celiac Awareness Month.  If your friend or loved one was just diagnosed with celiac disease, they are probably going through some major changes to their diet and lifestyle.  As their friends and family members, we can make it a whole lot easier for them by supporting them and using the following tips.

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Purchase 'Gluten is my Bitch' here!

1) Learn about celiac and share this information with others.

First of all, what is celiac disease?

Celiac disease is a serious autoimmune disorder, and it’s estimated that about 1 in 100 people have it worldwide.  When a person with celiac eats gluten, their body’s immune system begins to attack their small intestine.  When this happens, the body can have difficulty absorbing key nutrients from the foods they eat.  

When a person with celiac eats gluten, they may experience symptoms like stomach pain, a ‘foggy’ mind, and digestive symptoms such as chronic diarrhea or constipation.  However, the more serious effects are the ones that happen over the long term: celiac can lead to lactose intolerance, vitamin and mineral deficiencies, infertility, miscarriages, cancer, and diabetes.

There is currently no cure for celiac disease.  The only way to treat the disease and prevent these negative health effects is to stop eating gluten altogether.  (Yes, even just a crumb is too much!)  

So… what is gluten anyway?

Gluten is a protein found in wheat, barley, and rye.  But gluten isn’t just found in bread and pasta.  It can show up in surprising places!  For example, my local ice cream shop uses an ice cream mix that contains gluten, and many soups have thickeners that contain gluten.

If you want to learn more, some good resources include the Celiac Disease Foundation and Beyond Celiac.  Beyond Celiac’s guide for people who have been recently diagnosed with celiac disease is full of helpful information.  If you live outside the United States, check out this list to find celiac associations around the world.

If you are a family member to someone with celiac, make sure that you ask your doctor about getting tested.  Celiac disease is hereditary, so the likelihood that you have the disease is higher if someone in your family has it!  

2) Offer gluten-free snacks and foods when your loved one visits.

Imagine you’re at a party or hanging out at a friend’s place and everyone is sitting around eating cheese and crackers, pretzels, cookies, and lots of gluten-packed foods.  Your tummy rumbles, and you look on sadly as your friend takes a bite of that chocolate cake.

Help your friend feel welcome by having some gluten-free snacks available when they come over.  Many grocery stores have a health food section where you can find gluten-free-certified snacks, or you can check with your friend to see if there are any foods that they are okay with eating, as they probably know from experience.

When buying gluten-free snacks, watch out for sneaky gluten.  Even if none of the ingredients contain gluten, it is not necessarily safe for someone with celiac.  Gluten can be introduced in the production process—for example, if the product is made in the same facility as other gluten-containing products.

To avoid any confusion, look out for a certified gluten-free label.  Be mindful of labels that say ‘may contain gluten’ or ‘processed in a facility that processes wheat’.  You can also search for certified gluten-free products through the Gluten-Free Certification Organization.  When I’m unsure, I do a Google search and check a few different sources to make sure the product is 100% gluten-safe.

If you want to step up your support game even more, go with your friend or family member to a gluten-free expo.  Seriously, they exist!  At a gluten-free expo, you can try samples of gluten-free foods.  It’s a great way to find delicious new snacks and foods that are safe for both you and your loved one.

3) Learn to adapt recipes—and cook their favorites!

When my sister was diagnosed with celiac, I was surprised to learn how easy it was to adapt recipes to be gluten-free.  I’m an avid baker, and making cupcakes gluten-free was as easy as switching a few ingredients.  Home and cooking blog Blessed Beyond Crazy has a great guide to making most recipes gluten-free.

Take this opportunity to try out some new recipes!  There are plenty of delicious gluten-free recipes out there, and you might just find some new favorites from sites like Gluten-Free LivingGluten-Free Girl, or the Celiac Disease Foundation.

When preparing food, be mindful of cross-contamination.  It is common for people to use separate utensils and pans, as even the smallest bit of gluten will cause problems for someone with celiac.  For example, if you’re preparing toast, you can’t just plop it in the same toaster you’ve been using for your whole-wheat bread!

If you are living with someone with celiac, you’ll have to make some changes to the ways you store and prepare foods.  It’s a good idea to have separate utensils, cookware, and containers for gluten-free foods and to clearly label what is gluten-free and what is not.

4) Invite them out to eat.

People with celiac disease don’t have to hide under a rock in fear of stray gluten crumbs.  Celiac patients are able to eat out, travel, and enjoy food just as much as the rest of us.  It just takes a little more preparation!  So don’t be afraid to ask your friend or loved one out to eat at a gluten-free or celiac-friendly restaurant.

My favorite way to find restaurants that are safe for celiac patients is by using the Find Me Gluten Free app.  This app is especially useful if you are traveling out of town to a new place.  Plus, you may discover cool local places that you didn’t even know were there!  Through the app, you can find restaurants that have gluten-free menus and see other members’ ratings of the restaurants in the area.  So if that cool café has gluten-free muffins but rates poorly for cross-contamination, someone else will be sure to let you know in the reviews.

While eating out is still possible, it’s good to be aware that there’s a lot of misinformation about celiac.  People with celiac disease are often incorrectly grouped in with people who have food allergies or follow fad diets.  People with celiac disease sometimes fight an uphill battle to get people to take their dietary needs seriously.  So when you go out to a restaurant, don’t be afraid to speak up if something goes wrong with your friend’s food.

I remember clearly the first time I went out with my sister after she was diagnosed with celiac disease.  We explained to the waitress that my sister’s food needed to be cooked separately, on a surface that had not touched gluten.  We asked them to leave the onion rings off the plate, as they are fried with foods that contain gluten.  

Another server delivered the food, complete with—you guessed it—onion rings.  The waitress realized her mistake and brought the food back to the kitchen.  But when she returned, she told us they had simply ‘put it back on the grill for a few seconds’ to ‘burn off’ any of the gluten that touched the steak.  Gluten is not a virus or bacteria, but an actual protein that makes up some of the foods we eat.  For that reason, gluten cannot simply be 'burnt off' if there is cross-contamination.  If gluten touches a celiac patient's food, he or she can no longer safely eat it.

When you go out with someone who has celiac, you will oftentimes deal with misunderstanding and misinformation.  And celiac patients may get tired of constantly having to explain themselves and demand that their food be recooked.  Or, especially if they’re young, they may feel shy about standing up for themselves.

Your friend may appreciate having someone else to take the pressure off them every once in a while.  If a situation like the one we experienced happens, simply ask to speak to the manager and explain to them the problem.  Or, choose a restaurant with better systems in place the next time!

If you are traveling, check out Legal Nomads.  The author of the blog is a woman with celiac who travels the world trying out their local foods.  And she doesn’t let celiac get in the way of her enjoyment of a country’s native cuisines!  You can check out her site for gluten-free country guides for some common destinations: Germany, Greece, Italy, Japan, Portugal, Spain, and Vietnam.

5) Remember that the signs of celiac disease don’t always show outwardly.  (And don’t let that make you complacent!)

Different people experience celiac disease in different ways.  One person may get physically ill when they eat gluten, while another may feel slight discomfort, and another may experience a ‘mental fog’.  Just because your friend doesn’t break out in hives does NOT mean that gluten has no effect.  Remember that the worst effects of gluten are long-term impacts like diabetes and cancer.  Don't doubt their condition or relax your standards just because they don’t show any obvious symptoms.

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83 percent of people with celiac disease are not diagnosed or are misdiagnosed.

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6) Be supportive.  Be patient.  Be strict.

When people are diagnosed with celiac disease, they may not react how you expect them to.  People are different and will deal with the diagnosis in their own ways.  For example, I was amazed at how quickly and smoothly my sister adapted to her new diet.  When I asked her how she felt about the change, she told me that she was actually happy because not eating gluten made her feel better.

Other people may take more time to adjust to their new dietary restrictions.  And that’s ok!  Be supportive and patient as they go through the process of changing their diet and lifestyle.  Be sure to educate yourself about gluten so that you can support them as they make the change, and understand that it will take a little while to get used to the changes.

But… be strict.  It’s absolutely okay to give them that side-eye when they reach for a slice of pizza.  They are their own person, and only they can make decisions about their own health.  But knowing that someone else is watching them eat gluten may provide some additional social pressure.  And definitely don’t encourage them to ‘just take a bite’ of something with gluten!  Having one bite causes as much harm as eating the whole thing.  Help and support them in making good choices, not bad ones.

7) Be an advocate.

Show support for your loved one by standing up for causes that affect celiac patients the most.  You can make a difference for people with celiac across the country by ensuring that policies and research address the needs of people with celiac disease.

Did you know that an estimated 83 percent of people with celiac disease are not diagnosed or are misdiagnosed?  Plus, the average person takes 6 to 10 years to be diagnosed properly.  You can volunteer with groups like Beyond Celiac to push for investment into research on celiac and other digestive disorders to help improve this figure.  You can also donate to Beyond Celiac, the Celiac Disease Association, and other organizations that are working on research and education about celiac disease.

Further, people with celiac disease may be among those who suffer from changes in upcoming healthcare legislation.  You can sign up with the Celiac Disease Foundation here to push Congress to protect the rules against pre-existing condition discrimination—a protection with bipartisan support!   

In the end, being a good supporter to a friend or loved one with celiac disease is all about being a caring and thoughtful person.  Learn more about the disease, be careful with the foods you make and serve, and just generally give them the time, support, and positive social pressure they need to stick to a gluten-free diet.  That will make all the difference!

 

Marie Mekosh is a native of New Jersey, but Boston is her adopted home. She graduated from Harvard College, where she studied Social Studies with a focus on social movements and politics in Latin America. This past year, she spent six months traveling in Mexico, and she documented some of her experiences on her blog www.marieoverseas.com. She has always loved to write and dreams of someday publishing a novel!

 

Comments (2)

  1. Meagan Hooper

The 'Find Me Gluten Free' app is amazing!! I just downloaded it! We're a gluten-free family (my husband is very allergic) so these resources are incredibly helpful!

Thank you, Marie!

 
  1. Marie Mekosh    Meagan Hooper

I am happy that you found it helpful, Meagan! That app has really saved my family during trips away from home!

 
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