Four Questions I Wished I Asked When Diagnosed with Celiac Disease

I know from experience that a celiac diagnosis can feel overwhelming. In many cases, you go from being able to eat anything and everything you want (I used to constantly shock waiters with my appetite!) to having to learn what weird words like “gluten” or “celiac disease” mean for your future.

Depending on how familiar you are with celiac disease (especially since it’s hereditary and commonly clustered in families), you may think you know the questions to ask, like: How is celiac disease treated? Is celiac disease fatal? or What is the celiac disease diet?

Four Questions I Wished I Asked When Diagnosed with Celiac Disease

In the four years since I learned I have celiac disease, though, I’ve also learned what important questions I didn’t know to ask my doctor...and definitely regretted not asking. So whether you or someone you love has recently been diagnosed with celiac disease, might receive a celiac diagnosis in the near future, or has had celiac disease for years, here are four questions you might not think to ask your doctor - but probably should!

1. How do I properly read food labels? 

One of the biggest challenges with living with celiac disease is safely feeding yourself, and knowing how to actually read food labels is key to success. Depending on your hospital and your doctor, you might meet with a nutritionist after your celiac disease diagnosis. However, there’s no guarantee that they’ll talk about food labels (neither my doctors nor the nutritionist I met with spent much time on this topic) - unless you know to ask!

Even four years later, I'm still regularly learning new things about gluten free living and food (so don't be shy about sharing your own words of wisdom in the comments!). However, I have picked up a few tidbits of knowledge throughout my four years of celiac livin'. The first? All food products that claim to be "gluten free" must legally contain less than 20 parts per million of gluten, as required by the FDA. If you see a "certified gluten free" statement like in the photo below, that means the product has undergone extra testing (beyond FDA requirements) by an outside company like the Gluten-Free Certification Organization, and has been found to contain less than 20 PPM of gluten. 

Four Questions I Wished I Asked When Diagnosed with Celiac Disease

Sometimes even certified gluten free products will indicate that they're made in a facility with wheat. Although this can sound like a confusing combination, this just indicates that proper steps have been taken to prevent cross contamination and still produce products with less than 20 PPM of gluten. You should also keep in mind that some food facilities are miles long, which means that anything containing wheat could be far away from your gluten free food anyway.

Some celiacs are only comfortable eating certified gluten free foods, and avoid gluten free products made in shared facilities. On the other side of the equation, some people with celiac disease are OK with eating packaged foods that aren't labeled gluten free but don't appear to have any wheat-containing ingredients. And, of course, there are times when products are incorrectly labeled as gluten free when they really aren't (which is when doing prior research and reading labels, regardless of the product, comes in handy!) or gluten free products are mistakenly contaminated during processing (hello, Cheerios).

Four Questions I Wished I Asked When Diagnosed with Celiac Disease

Ultimately, the choice of which gluten free products you eat is up to you and what makes you feel your best. Regardless of how strict you are with the gluten free products you buy, though, the first step in eating a healthy gluten free diet is understanding how to decipher gluten free labels in the first place!

2. Can I get glutened from kissing? 

Trust me: when I was diagnosed with celiac disease at age 16, I had no idea how complicated a gluten free love life could be. However, I soon discovered the laughable but important truth: if a date eats pasta and then gives you a passionate kiss goodnight not too long afterward, yes, you can get glutened. 

I understand why this question isn’t commonly broached by doctors. After diagnosing a patient with celiac disease, doctors’ first priority is probably just helping them ditch the whole wheat bread and hidden gluten in their diet. However, no matter what romantic stage of life you’re in - dating, in a steady relationship, married - you’re probably going to enjoy a kiss every once in a while...and it’s impossible to protect yourself without knowing you need to be careful in the first place. 

Four Questions I Wished I Asked When Diagnosed with Celiac Disease

I’m certainly no doctor or medical celiac disease expert. Nonetheless, I’ve found that asking dates or significant others to brush their teeth (with gluten free tooth paste!) before any PDA is an easy fix. Sure, it’s an awkward request to make, especially when you haven’t known your date for very long. As I’ve shared before, though, nothing kills the mood more than being glutened...so ask your doctor for more details, keep a few spare toothbrushes handy and enjoying some kissing cardio! 

3. What else might I have to avoid beyond gluten and other wheat-related ingredients? 

I get it. When you first accept that you have celiac disease, watching for and eliminating gluten from your diet is hard enough - especially once you realize that gluten can hide in everything from soy sauce to soup to spices. Thinking back to how long it took me to feel healthy after my celiac disease diagnosis, though, I know that asking this question may have quickened my healing. 

As I explained in this post last year, going gluten free wasn’t enough for me. I also had to be hospitalized and fed through a feeding tube, cut out dairy and experiment with a low fodmap diet before I started regaining weight and feeling better. Through the years, I’ve also realized that oats (even gluten free oats) and corn flour in large amounts give me the same symptoms of being glutened. Over time, red meat also disagreed with my stomach, so that got kicked to the curb (correction: left in the grocery aisle) too.

Four Questions I Wished I Asked When Diagnosed with Celiac Disease

Like I've said before, everyone with celiac disease is different, which means your “perfect” gluten free diet may look very different than someone else’s. Some people feel best eating a low processed, paleo diet for celiac disease, some prefer a high-carb, vegan diet, and some eat a little bit of everything that’s gluten free, including dairy and oats. Nonetheless, asking your doctor what others with celiac disease commonly avoid beyond gluten could give you a roadmap to follow if you don’t start feeling better on a gluten free diet.

4. How could celiac disease impact my job or college experience?

This is one question that your doctor might not be extremely well-versed in but it doesn’t hurt to ask. Personally, I have the most experience with how celiac disease impacts going to college. I’ve shared my comprehensive guide for going to college while gluten free here, but the basics are that: 1) you’ll need to work with your college’s cafeteria to establish a protocol for celiac-safe gluten free meals, 2) you’ll probably need some paperwork signed from your doctor to get special accommodations, and 3) having an official celiac disease diagnosis is required (at least in my experience) to receive any of those accommodations. 

As such, your doctor will likely play an important role in your college experience, and asking this question can help prepare your doctor to receive paperwork requests in the future. Your doctor also may have tips they’ve learned from previous patients, such as asking about colleges’ food allergy and celiac disease protocol when first scouting colleges or how to handle the food-related social occasions that dominate college.

Four Questions I Wished I Asked When Diagnosed with Celiac Disease

As for how celiac disease could impact your job, your doctor might also know about accommodations you could want to request (like being excused from non-safe catered lunches or being able to store your food separately from your co-workers’) or give you tips on how to explain your dietary requirements to your boss, co-workers or clients

The Bottom Line of What to Ask After a Celiac Diagnosis:

It would be a lie to say that your doctor can 100% prepare you for everything related to living with celiac disease. There will be more questions you can’t think to ask until the problem stares you in the face (like “Can people with celiac disease eat wheatgrass?”). As experienced as your doctors may be, it can also be difficult for people who don’t have celiac disease to anticipate the daily challenges celiacs often face.

Four Questions I Wished I Asked When Diagnosed with Celiac Disease


Yet, the longer I’ve lived with celiac disease, the more I’ve realized that there is always more to learn...and that you can’t find answers without daring to ask any questions. 



What questions do you wish you’d known to ask your doctor after a medical diagnosis? Tell me in the comments! 

Comments

  1. I was lucky that the hospital where I was diagnosed with celiac immediately sent you to a nutritionist for a referral (and one who was fairly familiar with the disease). She went over the basics of label reading, provided resources of common products/support groups, and meal suggestions. I certainly wish this was the norm for treatment following a diagnosis.

    For kissing, the only research I know of (although there could be more recent studies) was by Maloney et al in 2006 looking at peanut protein exposure through saliva. They found that the recommendation for peanuts (and thus at that time other food allergens at the time) was to wait several hours and have the person eat an allergen-free meal. They found this to be more effective than immediate actions of brushing teeth and chewing gum. It's pretty cool that someone studied it, but I hope new research comes out at some point.

    PS: I LOVED this article! I'll certainly share it with anyone recently diagnosed with celiac disease. Thanks for putting it together.

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    1. Thanks for sharing that study - that's so interesting and definitely applicable to dating with celiac disease or food allergies. And thank you for the very kind words as well!

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  2. We didn't receive a referral to a nutritionist when my son was diagnosed, but I wish we had. Is there a way to advocate to make this part of the diagnosis protocol? Where would we start?

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    1. That's a great question! I don't have an answer and am not qualified to provide one. However, I would probably start by talking with your own doctors at your local hospital. Even just educating one or two people about the extra steps that can help newly diagnosed celiacs would make a difference!

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  3. Thank you for continuously sharing your brave battle and fun journey. You are an inspiration and a source of knowledge for many people.

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