I get a lot of questions about celiac disease from friends, families and even strangers (hello waiters!). In this post, I reveal the 12 questions I’m asked most about celiac disease. Some might be a bit TMI (too much information), but if you’re reading this article, I suspect you’re curious too. Please note this post contains affiliate links. Please read my disclosures.
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 an author, gluten-free blogger, and nutrition and health coach. My personal life and my professional life revolve around celiac disease and the gluten-free diet.
I get the same 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.
Please know that 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.
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 celiac 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 described gluten episodes in the bathroom as going “number three” vs. 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.
Keep in mind that every person with celiac disease reacts different 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 deteriorates 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 crumb of gluten is not okay for someone with celiac disease to eat, and it’s not safe for someone with gluten sensitivity either. A small amount of gluten can set off the inflammatory fire inside my body and destroy 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. Any sort of cross contamination can be harmful to my health.
Also, I can’t 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.
3. How do you 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 need to think outside of the breadbox.
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.
A really good gluten-free sourdough bread option is by Bread Srsly, which you can order online. Please note regular sourdough bread is not gluten free. Only sourdough bread made with gluten-free grains is gluten free and safe. (And I have a wonderful gluten-free sourdough recipe on my website.)
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 “glue.” 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 than 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.
California Pizza Kitchen offers certified gluten-free pizza, which means its staff has been properly trained to serve people with celiac disease.
I’ve written extensively about how to eat out safely while on a gluten-free diet in my popular ebook, The Ultimate Guide to Eating Out Gluten Free. I also write extensively about eating out safely in my published book, Dear Gluten, It’s Not Me, It’s You.
6. Are you allergic to gluten?
You cannot technically be allergic to gluten because gluten, a protein found in wheat, rye and barley, is not a recognized allergen, but you can be allergic to wheat, have gluten sensitivity, or have celiac disease.
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.
You can read more about the similarities and differences between gluten sensitivity and celiac disease in this article.
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.
While gluten is a protein found in wheat, barley and rye, it doesn’t always look like a slice of bread or pizza.
Foods such as soy sauce, which doesn’t look like it contains gluten, actually contains a lot of gluten (wheat). 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 gluten-free friendly manner by decoding the food label.
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 by the GFCO and other organizations 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-Free Certification Group (GFCO). The GFCO, for example, requires products bearing its official GF 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 gluten free) 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’ claims 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 with gluten and therefore doesn’t want to make such a definitive claim. (Read more about hidden gluten in spices.)
I often 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. You can read more about how to decode confusing labels for hidden gluten in this article.
9. Is it hard to be gluten free?
Yes. Very hard.
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
I like to say that while the gluten-free diet is never easy, it does get easier with time, especially as you become an avid label reader, find your trusted restaurants, and become a master at making delicious gluten-free meals.
If you need help coming up with gluten-free foods to eat everyday, I encourage you to download one of my gluten-free meal planning packs.
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 death rate than those with celiac disease, mainly because many people with “just” gluten sensitivity do not take their diet as serious as someone with celiac disease.
There are serious consequences to continuing to eat gluten if you have a gluten sensitivity or celiac disease, which you can read about in this article, 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!
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, or we had better early detection methods in place, we might be able to prevent more serious conditions from developing as a result of undiagnosed celiac disease.
12. Do you have to eat gluten free if you don’t have celiac disease?
People follow the gluten-free diet for a variety of reasons. If you have celiac disease, the gluten-free diet is a must. The same goes for those with non-celiac gluten sensitivity.
While gluten sensitivity is not as understood or researched of a disorder, it’s a real disorder affecting many people every day. And the only treatment option is a gluten-free diet.
Remember, nobody is following a strict gluten-free diet for fun. Many of my gluten sensitive friends have a worse reaction to gluten than me. The only people who eat gluten free that I know of do it to feel better or for medically necessary reasons.
In this article, I answered the 12 questions about celiac disease I get most. Now it’s your turn.
What questions do you have? Or if you have celiac disease or gluten intolerance, what questions are you asked most? Please leave a comment to share.
- Dear Gluten, It’s Not Me, It’s You (my book)
- Can Celiac Disease Kill You?
- 10 Facts Your Doctor Doesn’t Know about Celiac Disease and Gluten Sensitivities
- 21 Struggles Only Gluten-Free People Will Understand
- 10 Mistakes You’re Making to Sabotage Your Gluten-Free Diet
- Supplements for Celiac Disease and Gluten Intolerance