Today is the 13th anniversary of my being diagnosed with Celiac disease. It also happens to be Celiac Awareness Month! I thought I’d revisit this post and update a few things, but it’s mostly the same! Happy reading 😀
For a blog entry unrelated to what I do for a living, but entirely related to how I live.
I have Celiac disease, and must eat gluten free. At parties/bars/gatherings etc. I’m always asked the same questions about being gluten free, and Celiac disease, so I figured I would compile that info for those that either don’t want to ask (I’m always willing to talk about it, honest! I’ll talk your ear off if you let me), or just want to know more. 15 answers to FAQs below.
1. Why do you have to eat gluten free? Are you allergic?
No, I’m not allergic. I have an autoimmune disease called Celiac Disease or CD (spelled Coeliac in the UK, Europe, etc). This means that when I eat gluten, my body reacts as if it’s an invader, and in effect hurts itself in the process of trying to attack gluten. The only known treatment for Celiac is a gluten free diet.
According to Google: Celiac disease is a condition that damages the lining of the small intestine and prevents it from absorbing parts of food that are important for staying healthy.
2. WTF is gluten?
“Is that some kind of sugar?” and “Is that some kind of caffeine?” are both questions I’ve been asked about gluten. Gluten is a protein found in wheat, barley, rye, and their derivatives, as well as oats (though oats get it from being grown close to wheat, it doesn’t contain the protein if grown in isolation). It’s what makes pizza dough stretchy.
3. Oh. So can you have, like, rice?
Yes, I can have rice. Rice does have a gluten but not the *bad* gluten. As long as it’s not made with wheat, barley, rye, or contaminated oats, and is not cross-contaminated with those things, then I can eat it.
4. Cross contamination? Huh?
Cross contamination is when something with gluten “contaminates” something without gluten. For instance, if you make a grilled cheese sandwich, anything that touched the bread all have gluten contaminates on them. The pan, the spatula, the butter knife, and even the butter if you spread butter on the bread with the knife, then put the knife back in the butter.
I can get really sick just from a little crumb, so if at a restaurant, a cook used that same spatula to flip my steak over or the butter to add to my vegetables, it could get crumbs on it and so get cross contaminated.
I like to use poop as an example for cross contamination. When a guy is making your steak, you want 0 poop on it. But if he had poop on his hands, or on the counter, or on the grill, or on the utensils he used, your steak is gonna have poop on it. I want to eat as much gluten as you want to eat poop. I also don’t want to eat poop… But replace “poop” with “bread crumbs” in the example above, and you see my point. I hope 😛
5. Oh shit. You can’t eat anywhere, can you?
No, I can. Some places train their staff really well. I’ve eaten without incident at Outback Steakhouse, Chipotle, and more. If you’ve seen me, you know that I’m not in any way starving 😛
Edit 5/17/2020 to add: I started an Instagram account called the_traveling_celiac, which is all pics of delicious food I’ve eaten at restaurants all over the world. I post a new picture every day! You really can eat very well at restaurants, you just need to be careful and know what to look out for. I rely on an app a lot (https://www.findmeglutenfree.com/) everywhere I go. It’s like Yelp specifically for gluten free food!
6. But you can’t even eat pizza…
I can eat *gluten free* pizza. Cottage Inn, Buddy’s, Aubrey’s all make a good gluten free pizza that doesn’t taste like cardboard. Amici’s in Berkley, MI makes an amazing gluten free pizza crust that fakes out my brain every time, making me think I’m gonna be sick for sure, but I nope. It really was gf.
Edit 5/17/2020 to add: Wow this is an old list lol I want to add Renee’s Pizzeria in Troy, MI – 100% gluten free, even deep dish! And Como’s in Ferndale, MI – amazing Detroit-style gluten free pizza. And of course Pizza Express in the UK OMG that Carbonara Pizza… The point is, you can find good gluten free pizza everywhere, just be careful! See the FAQ on fad diets for more.
7. Wait, No barley? That means you can’t drink beer! OMG! I would die!
Well, I can’t have “normal” beer but I can drink gluten free beer. It’s not as good as normal beer, generally, because it can’t have the good barley, wheat, or rye. It is generally made with sorghum and rice, instead. If you shop at Meijer, look near the Woodchuck and Angry Orchard part of the beer section and you’re likely to see Red Bridge, which is made by Anheuser Busch, New Grist, New Planet… Some better liquor stores have Bards, T’weason Ale by Dogfish Head, and Green’s Dubel Dark and Tripple Blonde. Side by side tastings with “normal” beers of the same, yeah you’ll be able to tell the difference. But 6 years in, I’m just happy I can go to Meijer and buy a 6 pack that isn’t hard cider.
Edit 5/17/2020 to add: I don’t drink beer anymore, really. For hard ciders, if you can find JK’s Scrumpy GET IT! It’s so good. And, ya know, White Claw is gluten free 😛
8. Did you say 6 years? How long did it take for you to find out you had Celiac?
It took 3 years for me to get the diagnosis. I started feeling nauseated constantly, then had issues with arthritis, headaches, stiff neck, tendinitis. My general doctor initially sent me to a rheumatologist to investigate the arthritis, but that was inconclusive. After a lot of struggling to find answers (chelation, avoiding a variety of foods like nightshades) I was showing fatigue and depression at the doctors office. I started experiencing lactose intolerance, borderline anemia. I was depressed because I couldn’t find out what was wrong with me. My doctor offered anti-depressants to take care of that. I declined. I asked if I could be referred to a gastroenterologist to further investigate the stomach-related issues.
After my first session, the GI doc thought perhaps I had Menieres disease (an inner-ear issue). I don’t recall the testing for this, but I turned out not to have that, either. I ended up in the GI docs office having a breakdown, explaining that I could NOT live the way I had anymore. So he signed me up for all of the blood tests that he could order. One of the tests came back positive – Celiac. I had to get a confirming test, which is an upper endoscopy with biopsy. Basically, they stick a scope with a camera on the end down my throat, and take samples of my intestines. This test confirmed the diagnosis – the villi in my intestines were worn down (I have the pictures to prove it :P). When I went to talk about the diagnosis with my GI doc, we actually high-fived. The day of the test was May 17, 2007.
Edit 5/17/2020 to add: LOL I do indeed have Meniere’s disease (diagnosed for real in July 2017). I also want to note, my GI doc was next to useless. I had to beg to get tests done. After diagnosis, he said “there’s plenty of information out on the internet about Celiac disease”. He didn’t refer me to a dietitian, or a nutritionist. Ugh
9. So how do you feel about the fad gluten free dieters?
Meh. I have mixed feelings. For one, it’s made gluten free more popular so the options I have now are way more than the ones I had 6 years ago. The bad side of that is, anyone thinks they can make gluten free. But some places actually realize that “gluten free” doesn’t necessarily mean “Celiac friendly”. For instance, Domino’s Pizza has created a gluten free crust. However, they warn that Celiacs or those that are allergic should *not* have it because of cross-contamination. One guy was buying regular bread, and re-packaging it as gluten free so he could add a markup of rediculous margins (fresh loaf of white bread: $1.99 with about 20 slices; frozen loaf of gluten free bread: $4.99 with about 12 slices).
It also makes people look at me as if I just want attention, or treat me as such, when I ask for gluten free. It has taken me years to get “ok” with going out to dinner with other people. I’m always asked where I want to go because I’m “the picky one”. I have had some depression and anxiety over eating out because of this. Now, having a gluten free menu and well trained staff has gotten much better, so it’s a bit easier.
Edit 5/17/2020 to add: It’s gotten better, but not a lot.
10. Holy shit, $4.99 for a small loaf of *frozen* bread? That’s expensive!
Yeah, being gluten free is expensive. That’s probably why it’s been more popular to make gluten free stuff – we will pay the higher prices to get “normal” foods. For instance, I paid $10 for 4 small muffin-size crumb cakes. I’m not proud of it, but man those were tasty. A 4 pack of the very yummy T’weason Ale by Dogfish Head is $10.
11. So did you always have it? Is it genetic or what? How did you “get it”?
Celiac disease is a genetic autoimmune disease. So I’ve technically always “had it”. Celiac is generally triggered by a traumatic event on the body. Car accidents, pregnancy, etc. Mine was triggered by planning and having my wedding in a few short weeks. So yes, I blame my ex-husband for the Celiac (as well as many other things, but that’s a different post) 😛 One side of my family is more prone to autoimmune disease, and Celiac has shown up on that side in 2 other people. Autoimmune diseases like to stack, as it were, so if you have one you’re more than likely to have another.
Edit 5/17/2020 to add: Since then my brother’s been diagnosed, as well.
12. Well, it sounds a lot easier for you then…
Not exactly. Grocery shopping is still a nightmare. For instance, I used to get a specific brand of hummus and for a long time I never got sick. I didn’t read the label after the first time, because I thought I could “trust” it. One time, I got the very same hummus but got sick. WTF? I checked the label, and found that they had changed where it was manufactured, and so it was now “made on shared equipment” with gluten-containing products.
Another example: I once bought some (labelled gluten free) frozen french toast sticks. I trusted the company because I had been eating their other gluten free labelled products for a while, so I didn’t read the ingredients. I got sick. Come to find out, they mistakenly labelled them gluten free because some barley malt “accidentally” got into the recipe. I don’t buy their products anymore.
There’s also the problem that the FDA hasn’t standardized gluten free labeling. There’s gluten free certification organizations, but that’s not standardized either. Things can be labelled gluten free if they have 20 PPM (parts per million) of gluten, but that is too much for many of us more sensitive Celiacs.
Edit 5/17/2020 to add: The FDA now has some standards, but I still have to read lots of labels (both for other food allergies/intolerances but also cuz of sneaky gluten). Things can still say “gluten free” but be made on shared equipment, or have a “may contain wheat” statement. I avoid those as if they’re not claimed to be gluten free because I have a chance of getting glutened. I look for Certified Gluten Free, and if they list shared equipment, I have to see a statement about testing practices etc. Grocery shopping still sucks!
13. What would eating gluten do to you?
The amount I consume is what determines how long I feel ill. When I say “ill” it’s how my initial symptoms were – nausea, headache, stiff neck, etc. If my salad had a crumb from a crouton in it, I’ll be sick for up to a few hours. If I have something like corn tortilla chips that are fried in the same oil as breaded things, I can be sick for a day. If I eat some full-on gluten like a burger with a gluten-filled bun, well, I don’t know what would happen. I don’t *cheat* because life is so miserable if I have any gluten at all.
Under the hood, as it were, every time I consume gluten the villi in my intestines get worn away, and that means the intestines are less able to absorb vital nutrients. It also, over time, can cause early onset osteoporosis, stomach cancers, etc. So yeah, not worth “cheating”.
14. But I know a guy/gal that has Celiac and they eat gluten sometimes….
If that person is really a Celiac, then they either don’t care or need a better GI doctor. If their doc doesn’t know that eating even a little gluten is harmful, they need a new doc. Since Celiac is an autoimmune disease, it effects everyone’s body differently. Some Celiacs have little to no reaction when eating gluten, but their body still treats it the same way. So they are still damaging themselves and opening themselves up to worse illnesses.
That being said, if someone suspects they have Celiac but need to be tested, they have to take a “gluten challenge”, which is 2 weeks of eating gluten-filled foods. If I were tested right now for Celiac, it would most likely come back negative because my villi have healed over time. If I started eating gluten for the next 2 weeks, I’d show up positive again.
15. So how long did it take for you to feel “normal” again once you were diagnosed?
It took from 1 to 2 months. There was some trial and error, as I figured out that gluten can be found in a *LOT* of things, not just food but medicines and vitamins, drinks, even chapsticks, gum, and hell even oat powder on latex gloves (my dentist uses the unpowdered vinyl ones on me now :/). And only wheat is one of the 8 major allergens, so it has to be listed if it’s in the ingredients. However, barley, rye, and oats do not need to be listed. Want a challenge? Read the labels for half of the items you purchase at the grocery store and look for things like natural flavors, dextrin, food starch, glucose syrup, hydrolized vegetable protein, seasonings, broth… These are some of many that I have to watch out for each time I purchase something because they may contain gluten. It’ll add quite a bit of time to your shopping trip…
Have any other questions? Just comment on this post and I’ll answer 😀