This post, 12 Questions About Celiac Disease I’m Asked Most, contains affiliate links. Please read my disclosures. This article last updated December 2019.
I’m always asked a lot of questions about celiac disease, after all, it’s a big part of my life.
I love to eat, cook and socialize (and all socializing involves food, right?) and I enjoy a career as a gluten-free blogger (I’m also a nutrition and health coach). My personal life and my professional life revolve around celiac disease and the gluten-free diet.
Naturally, people are curious about celiac disease. They want to know what I’m eating, what happens when I get glutened, and if I’m going to die from celiac disease.
I get the same 12 questions over and over again.
While I don’t mind answering such questions, I figured I could make it easier on us all by answering them in this post.
Related Reading: What is Celiac Disease?
I love when people want to learn about celiac disease. Knowledge is understanding. The more people who know about celiac disease the more people will know what symptoms to look for (maybe they or a loved one has celiac disease), and most of all, the more people will be more sensitive and understanding to the plight of a person with celiac disease.
12 Questions About Celiac Disease I’m Asked Most
In this blog post, I share the 12 questions about celiac disease that I’m asked most. They include:
1. What happens when you eat gluten?
This is probably the top question I get and naturally people are curious.
They want to know if I break out in a rash, go into anaphylactic shock or have diarrhea all day and night. (That would suck, right?)
The truth is I get sick. Really sick. Usually about 1-2 hours after eating gluten, I have to urgently go to the bathroom. I experience bloating and intense cramping in my abdomen. After I’ve enjoyed some toilet time I feel much better.
I’ve affectionately called gluten episodes “number three” vs. a number two — get it? (If you don’t get it, send me an email, I’ll explain.) Thank goodness I only get accidentally glutened a few times per year. I’m really careful about what I eat.
Related Reading: 7 Ways to Recover from an Accidental Gluten Exposure
Keep in mind that every person with celiac disease reacts differently when they are glutened.
I know many people who are asymptomatic or have “silent celiac.” They don’t even know if they’ve been glutened. Others, however, are not so lucky and have an immediate, visceral reaction.
What you should also know is that, when I accidentally eat gluten, there is more going on inside of me than meets the eye.
Celiac disease is an autoimmune disease. This means my body goes into attack mode when it’s triggered by gluten. My immune system attacks the healthy tissue surrounding my small intestine, chipping away at my good health and making it difficult for me to properly absorb nutrients from the food I eat.
The more I eat gluten, whether on purpose or by mistake, the more it chips away at my health and puts me at risk for accumulating other autoimmune diseases, cancer and early death.
2. Why do you insist your food never touches gluten?
Even a little gluten is NOT okay for someone with celiac disease (nor someone with a gluten sensitivity either). Even a crumb of gluten can set off the fire inside my body and begin to chip away at the lining of my small intestine.
This means if you give me a burger with the bun on it, I cannot just pull off the bun and eat the burger because it’s already touched gluten and therefore contains gluten.
It’s also why I can’t eat fries, which are naturally gluten-free, if they’re cooked in a shared deep fryer that was also used to cook breaded chicken nuggets.
No, I can’t just pick off the croutons from my salad either, toast my gluten-free bread in any old toaster, nor cook gluten-free waffles in a waffle iron used to cook regular waffles. There’s just too much risk of gluten bits getting into my food.
I can’t eat anything that has come into contact with gluten. Period.
3. How do live without sandwiches?
This is my favorite question… mainly because it’s a bit absurd.
The Standard American Diet (SAD for short) dictates that lunch be a sandwich, but my gluten-free diet dictates otherwise. I rarely eat sandwiches and much prefer salads, stir-fry bowls, sushi, leftovers from last night’s dinner, or lettuce-wrapped burgers.
There are so many options we can eat for lunch… and we most definitely like to think outside of the sandwich.
4. Are there any good gluten-free bread brands?
Ah, the bread question again! I get it A LOT.
I say if you are going to eat gluten-free bread, make sure it’s a good one. There are a lot of icky, sand-like tasting gluten-free breads out there.
My favorite bread is a local brand called Outside the Breadbox. It’s definitely worth ordering online (and if you’re in a city with Natural Grocers, you can get it there). I also like Schar, Canyon Bakehouse and Three Baker’s.
Gluten-free bread is definitely better heated (if possible). Unfortunately the gluten protein is what makes regular bread soft, doughy and chewy. Gluten comes from the Latin word that means “gluten.” Without it, your bread just isn’t the same.
5. Can you really eat out safely?
Eating out while following a strict gluten-free diet is tough. Remember, I can’t just take the bun off my burger… my burger can’t even touch the bun!
That said, I find that eating out IS possible with a few precautions and hacks.
First, it’s important to eat as naturally gluten-free as possible when eating out. A burger is more likely to be prepared safely gluten-free than let’s say a gluten-free waffle or pizza where shared mixing bowls, ovens and cooking utensils are used.
Second, it’s important to research a restaurant ahead of time, ask your server lots of questions, read reviews on the Find Me Gluten Free app, and talk to other gluten-free eaters to see where they have safely enjoyed a meal out.
Third, I always take my Nima Sensor with me. When in doubt, I test my food for gluten so I can know with some degree of certainty if my food is or is not gluten-free.
Related Reading: 13 Things You Need to Know About the Nima Sensor
Believe it or not, a lot of chain restaurants do gluten-free well – Chili’s, Red Robin, Five Guys, Chipotle and even Caribou Coffee has safely wrapped gluten-free breakfast sandwiches. California Pizza Kitchen and Pizza Hut are two restaurants that I know are certified gluten-free restaurants, which means their staff has been properly trained to serve those of us with celiac disease.
I’ve written extensively about how to eat out safely while on a gluten-free diet in my popular ebook, Eating Out Gluten Free.
Related Reading: How Did 20 Restaurants Fare Against the Nima Sensor?
6. Are you allergic to gluten?
You cannot technically be allergic to gluten because gluten is not a recognized allergen, but you can be allergic to wheat, have a gluten sensitivity or have celiac disease.
Related Reading: Gluten sensitivity vs. celiac disease
So, no, I’m not allergic to gluten, but I do have celiac disease, an autoimmune disease that affects about 1-3 percent of the U.S. population. When I eat gluten, my body launches an attack on the lining of my small intestine, which prevents me from properly digesting and absorbing food.
People who are sensitive to gluten experience inflammation and discomfort when they eat gluten. Gluten sensitivities affect about 18 million people in the U.S. and should be treated with the utmost care, as unmanaged diseases turn into other – often more serious – diseases.
Related Reading: How Do I Know If I’m Gluten Intolerant?
7. Can you tell if something is gluten-free by looking at it?
Unfortunately it’s really hard to tell if something is gluten-free just by looking at it.
Gluten is a protein found inside wheat, barley and rye. Obviously things like breads, pastas and pizzas contain gluten – it’s easy to see.
However, things like soy sauce, which doesn’t look like gluten, is made from 40 percent wheat (wheat is usually the first ingredient in soy sauce). Licorice also contains wheat flour yet it looks gluten-free.
I’ve written extensively about these common surprise products that contain hidden gluten. While I can’t tell if something is gluten-free just by looking at it, I can usually get an understanding if gluten-free ingredients were used and if it was prepared in a GF-friendly way by reading the product’s label. I also have my Nima Sensor to guide me in times of question.
8. What’s the difference between gluten-free and certified gluten-free?
There are many products on the market today bearing different labels, making it tricky to decode what products are gluten-free and what products are not. Some products are certified gluten-free (the GF with a circle around it) while other products are simply labeled “gluten-free.”
If you eat gluten-free, there is an important and distinct difference between the two labels that you must understand.
Products that are certified gluten-free have been verified to be gluten-free by a third party agency, typically the Gluten Intolerance Group or GIG. The GIG, for example, requires products bearing its seal to contain less than 10 ppm of gluten vs. 20 ppm that the FDA legally requires a company to comply with in order to be accurately labeled “gluten-free.”
Products labeled “gluten-free” (but are not certified GF) must contain less than 20 ppm of gluten, according to FDA regulations, and these companies self-certify themselves. This means there is no third-party verification process that verifies if the manufacturers are truthful; rather, if a product makes a consumer sick, it should be reported immediately to the FDA for investigation.
Products that do not contain any gluten-free label also may be considered free from gluten, however, it typically means the manufacturer is not sure if the product is gluten-free and doesn’t want to say as much. For example, a spice might contain “ground garlic” but not be labeled gluten-free. This may mean the spice manufacturer is unsure if the raw ingredients used contained or came in contact and therefore doesn’t want to make such a definitive claim.
I use my Nima Sensor to test foods that aren’t clearly labeled as “gluten-free.” For example. Doritos are not labeled gluten-free, however, there are no gluten-containing ingredients in them. And, according to my Nima Sensor, they do not contain gluten. Same goes for Zyrtec.
Some products have an allergen disclosure statement that can be confusing for those of us following a gluten-free diet. Things like, “Also manufactured in a facility that manufactures wheat” or “made on the same equipment as products containing wheat.”
I avoid products that are made on the same equipment as wheat, but I’m okay with products made in the same facility as wheat as long as the product is clearly labeled “gluten-free” or is certified gluten-free.
If you have a wheat allergy, you must read those disclosure statements carefully.
9. Is it hard to be gluten-free?
Many people say, “But it’s so much easier to be gluten-free today.” While I understand what they’re saying, putting “easy” in the same sentence as “gluten-free” is not something someone with celiac disease would ever do. #thestruggleisreal
Related Reading: The Emotional Burden of the Gluten-Free Diet
10. Can you die from celiac disease?
Yes, you can, however, it’s not an immediate death.
Autoimmune disease slowly chips away at your health. When unmanaged, autoimmune diseases turn into more autoimmune diseases and even more serious diseases like cancer, diabetes and Alzheimer’s.
I prefer to manage my disease as much as I can (at least what I can control) to give me the best shot at living a long, disease-free life. If that means I have to order a gluten-free meal when I’m in a nursing home, so be it.
Related Reading: How I Healed Myself from Celiac Disease
On another note, those with a gluten sensitivity have a higher early mortality rate than those with celiac disease, particularly if their disease is not properly managed. There are serious consequences to continuing to eat gluten if you have a gluten sensitivity or celiac disease.
Related Reading: Don’t Cheat on Your Gluten-Free Diet
11. How did you find out you have celiac disease?
I was officially diagnosed through a blood test (and my diagnosis was later confirmed with an endoscopy procedure to biopsy my small intestine).
I had previously discussed my painful bloating and chronic gas with my doctor, and she had the wherewithal to test me for celiac disease. I didn’t even know she was testing me for it – but alas – she did and I’m thankful!
Related Reading: How to Get Tested for Celiac Disease
If you suspect you have celiac disease, ask your doctor to test you, or order this simple at-home celiac test to test yourself in the privacy of your own home.
While the GI symptoms are what prompted me to discuss my health concerns with my doctor, the truth is I had many unexplained ailments that plagued me my entire life that I thought were no big deal.
I suffered from occasional but painful migraines, red bumps up and down my arms, geographic tongue and cold sores, feeling light headed and shaky between meals, low iron levels, etc. All of these things cleared up after I started eating strictly gluten-free. If only doctors knew to look for celiac disease sooner, we might be able to prevent more serious conditions from developing.
12. Are you gluten-free because you have celiac disease or are you just on a gluten-free diet for fun?
Oh man, I don’t like this question AT ALL when it’s framed like this!!
I feel like people are okay if I say, “I eat gluten-free because I have celiac disease,” but they stick their nose up at my gluten sensitive friends who don’t have celiac disease even though they get sick when they consume gluten, too.
You should know that some of my gluten sensitive friends have a worse reaction to gluten than me. I feel for them in a world where social norms make it okay to poke fun at gluten-free dieters.
Trust me, the vast majority of people I know who eat gluten-free do it to feel better, not for fun.
In this article, I answered the 12 most pressing questions about celiac disease I get most. Now it’s your turn!
What questions are you asked most as it pertains to the gluten-free diet, celiac disease and/or a gluten sensitivity? Please leave a comment to share.