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 my career is in the food industry (I’m a nutrition and health coach and gluten-free blogger). My personal life and my professional life revolve around celiac disease and the gluten-free diet.
Naturally, the people I’m with 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 few questions over and over again.
That said, I don’t mind answering questions at all. In fact, 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 a celiac’s plight.
I decided to put this blog post together to share with you the 12 questions I’m asked most as someone with celiac disease. Please note that this post contains affiliate links. Please see my disclosures page for more information on affiliate links.
12 Questions About Celiac Disease I’m Asked Most
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 anaphylaxis 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” – 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. (Read: 7 Ways to Recover from an Accidental Gluten Exposure)
Keep in mind that every celiac reacts differently when they get glutened. I know many celiacs who are asymptomatic so they don’t even know if they’ve been glutened, while others have an immediate reaction.
While that is the answer to the question you want to know most, there is more going on inside of me when I accidentally eat gluten.
Because I have celiac disease, which is an autoimmune disease, my body goes into attack mode when gluten is present. An autoimmune disease is when the body gets confused. Killer T cells programmed to attack foreign invaders and viruses in the body are attacking healthy tissue instead everytime I eat gluten. (Did you know that celiac disease is the ONLY autoimmune disease where the trigger food – gluten – is known?)
Every time I eat gluten, I damage the lining of my small intestine, which, as a result, deters my body’s natural ability to properly absorb nutrients from the food I eat. The more I eat gluten, the more it chips away at my health and puts me at risk for other autoimmune diseases, cancer and early death.
2. Why do you insist your food never touches gluten?
Even a little gluten is NOT okay. A crumb can set off the fire inside my tummy and will chip away at the lining of my small intestine.
So if you give me a burger with the bun on it, I cannot just pull off the bun and eat the burger. It’s already touched gluten and therefore contains gluten. That’s also why I can’t eat fries, which are naturally gluten-free, if they’re cooked in a shared deep fryer with breaded chicken nuggets.
I can’t just pick off the croutons from my salad, toast my gluten-free toast in a toaster that is used to toast regular bread gluten, nor cook gluten-free batter in a waffle iron that cooks gluteny 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 you eat a sandwich?
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 or deli meats.
There are so many options us gluten-free folk can eat for lunch… and we most definitely like to think outside of the breadbox.
4. What is a good brand of gluten-free bread?
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 bread soft, doughy and chewy. Gluten comes from the Latin word that means “gluten.”
5. Do you ever eat out?
Eating out as someone who is on a strict gluten-free diet is tough. Remember, you can’t just take the bun off my burger… my burger can’t even touch the bun! I find that eating out is possible with a few 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 waffle makers are used.
Next, 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 GF people and see where they have safely enjoyed a meal out.
Last, I always take my Nima Sensor with me. When in doubt, I simply test my food for gluten so I can know with some degree of certainty if my food is gluten-free. 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 actually 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 ebook, Eating Out Gluten Free. And I share a list of 20 popular restaurants I’ve tested for gluten using my Nima Sensor in this article, 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. (Read about the differences between 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, damaging it and preventing me from properly digesting and absorbing food.
People who are gluten sensitive experience inflammation and discomfort when they eat gluten. Gluten sensitivities, which affect about 18 million people in the U.S., should be treated with the utmost care, as unmanaged diseases turn into other – often more serious – diseases.
If you want to learn more about why people say they have a “gluten allergy,” and what it really means, read my post, “Do You Have a Gluten Allergy?
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 inside things like wheat, barley and rye. Even things like soy sauce, which doesn’t look like traditional gluten, is made from 40 percent wheat (wheat is usually the first ingredient in soy sauce). Licorice contains wheat flour – but it looks “gluten-free,” right?
I’ve written extensively about 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 does certified gluten-free mean?
There are so many products on the market today bearing different labels – so it can get tricky decoding what products are gluten-free and what products are not. Some products are certified gluten-free and others are just labeled “gluten-free.” There is an important and distinct difference between the two labels.
Products that are certified gluten-free have been verified to be gluten-free by a third party agency (some third party agencies require products bearing their seal to contain less than 10 ppm of gluten vs. 20 ppm, the FDA requirement).
Products simply labeled “gluten-free” (not certified GF) contain less than 20 ppm of gluten, according to FDA regulations, and these companies self-certify themselves. Products that do not contain any sort of gluten-free label also can be gluten-free if they contain only gluten-free ingredients.
8a. What about “Manufactured in a Facility that has Wheat?”
Some manufacturers like to confuse us. The packaging will say the product is certified gluten-free, but then it will list a disclosure that says, “Also manufactured in a facility that manufactures wheat.”
The product is safe for you to eat… it just means that that particular allergen is used in that warehouse, but that the allergen is in a separate place/room/piece of equipment. (If you are deathly allergic to wheat, however, it may not be safe for you.)
8b. What about “Made on the Same Equipment?”
Other manufacturers like to say on their packaging, “Made on the same equipment used to manufacture products containing wheat.” This is where it gets tricky.
While good manufacturing processes require a company to clean equipment between product runs, there is always a chance that gluten could get into your food. You have to use your best judgement. I typically just eat something else – not worth the risk.
9. Is it hard to be gluten-free?
Many people say, “But it’s so much easier to be gluten-free today,” and yes, while I understand what they’re saying, putting “easy” in the same sentence as “gluten-free” is not something someone with celiac disease ever does. #thestruffleisreal
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 disease. 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.
On another note, those with a gluten sensitivity have a higher early mortality rate than those with celiac disease, if their disease is left unmanaged. There are serious consequences to continuing to eat gluten if you have a gluten sensitivity or celiac disease. Don’t cheat on your gluten-free diet. It ain’t worth it!
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 discussed my painful bloating and constant 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! You can read more about it in My Celiac Story.
While the GI symptoms prompted me to discuss things with my doctor, the truth is I had many unexplained ailments that plagued me my entire life. Occasional but painful migraines, red bumps up and down my arms, geographic tongue, feeling light headed and shaky between meals, low iron levels, etc. All of these things cleared up after going gluten-free. If only doctors knew to look for celiac disease sooner.
12. Are you gluten-free because you have celiac disease or are you just on a gluten-free 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, “Yes, 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 from 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 cues make it okay to poke fun at gluten-free dieters. Trust me, if gluten doesn’t make you sick, you’re not going to be following a restrictive gluten-free diet. No one is making up a gluten sensitivity. No one.
There you have it – 12 questions about celiac disease that I get A LOT.
If you’re reading this article and have celiac disease (or a gluten sensitivity), I’m sure there are other questions you get all the time too. What question are you asked most? Please sound off in the comments. I’d love to know!
Learn more about celiac disease:
- 10 Facts Your Doctor Doesn’t Know about Celiac Disease and Gluten Sensitivities
- 12 Interesting Facts about Celiac Disease
- What Causes Celiac Disease and Can It Be Prevented?
- 5 Reasons Why Early Detection of Celiac Disease is Crucial
- 10 Symptoms of Gluten Sensitivity [With or Without Celiac Disease]
- Gluten Sensitivity vs. Celiac Disease