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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. Do 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 do 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 glutened a few times per year. I’m really really careful about what I eat. 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.

2. Can’t you just take off the bun?  It’s not that easy. If I still eat what’s inside the bun, and it was touching gluten, I can get sick because the burger was cross contaminated. So, nope, as someone with celiac disease, I can’t just take off the bun. I can’t eat anything that has come into contact with gluten. Period. (Read more about cross contamination.)

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.

4. If I do want a gluten-free bread, which do you recommend? Ah, the bread question again!  I get it A LOT.  If you are going to eat 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 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.  (Read why I broke up with [gluten-free] bread.)

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.

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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 Starbucks has a safely wrapped gluten-free breakfast sandwich. 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.

6. Are you allergic to gluten? You cannot 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% 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. I also tested positive for a wheat allergy, which only affects about .4% of the U.S. population. (So technically I’m allergic to wheat too!)

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.

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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 labeled “gluten-free” should contain less than 20 ppm of gluten, according to FDA regulations, and these companies self-certify themselves (i.e. the foxes are guarding the hen-house, as in the case with Cheerios). Products that do not contain any sort of gluten-free label also can be gluten-free. I used my Nima Sensor to test Doritos, which isn’t labeled gluten-free, and it did not contain gluten. Same goes for Zyrtec.

9. Is it hard to be gluten-free? Yes. Very. 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. The struggle is real.

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.

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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.

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.

12. Do you have celiac disease or are you just gluten-free?  Oh man, I don’t like this question AT ALL!!  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. 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 so stop judging!

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!

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