Celiac disease: A day in the life

celiac-life

Ever wonder what it’s like to have celiac disease? Of course you do. Let me take you through 24 hours of my life and see what a pain in the ass joy it is to have celiac.

The Day: Saturday, October 15, 2011

7:00am: Wake up. Crave coffee. Make coffee. Drink coffee. So far, so good.

7:30am: My first hunger pang. Luckily, breakfast is probably the easiest meal to figure out. Plenty of good gluten-free cereals on the market. Pour a bowl of Gorilla Munch with almond milk. Half-way thru meal, stomach hurts already. Dump the rest out. On a side note, I once offered my daughter’s friends some Gorilla Munch, and she was absolutely horrified. Note to company: perhaps not the best choice for the name of a food.

7:40am: Bathroom trip. Will spare you the details.

12:00pm: Make lunch. 3 eggs and an Udi’s bagel. Forget to put the toaster on the bagel setting and burn the crap out of my bagel. Rats. Eat it anyway.

12:40pm: All packed and ready to go for an overnight in Philly (30 minutes away). We have a charity event to attend.

12:41pm: Realize I haven’t packed any food for my journey. Open my gluten free drawer and throw a potpourri of items in a bag: Twigs & Sticks, 3 bananas, 2 Kind bars, almonds and pistachios. Way to plan ahead Dude.

3:00pm: Arrive in Philly and immediately think food. Simply cannot risk eating out and ruining my night (and next six months) by getting glutened. Play it safe and get some sushi (the Dude’s favorite).

5:00pm: Go up to the top floor of hotel for some free appies and beverages. Everything looks awesome. And dangerous. I ask the server if the tuna is ok. She checks with the chef. Says it’s fine. Gives me ingredients. Includes soy sauce. Sigh. Watch everyone else eat.

6:30pm: Arrive at charity event. Cocktail hour first. Wow…everything looks great. I eat a carrot. Head to the bar.

8:00pm: First dinner course is served. We planned ahead to let the hotel know my dilemma but the server seems really annoyed when I remind him. Brings salad out. Remind him AGAIN I cannot eat gluten. Takes salad back. Brings back a plate of lettuce. Head back to bar.

9:00pm: Main course. Steak and shrimp over a sweet potato puree. As long as I don’t have the sauce on top, server assures me it’s totally safe. Must eat so I have no choice. Really good, but hard to enjoy as I just can’t be sure it’s ok.

10:00pm: Dessert served. Not even close.

1:00am: Back at the hotel lobby. Everybody drinking. Everybody starving. Somebody goes out and brings back 20 slices of all kinds of pizza. Everybody enjoys. Well, not everybody.

2:00am: Call it a night. Already mourning the next morning’s breakfast that I won’t be able to eat.

9:00am: Breakfast. Everyone complaining about all the crap they ate the night before.

Eat my fresh fruit and smile.

Hmmm…maybe having celiac isn’t so bad after all.

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32 thoughts on “Celiac disease: A day in the life”

  1. Waiters!! Are people selfish, uncaring or just lazy? Waiters and resteraunts need to have financial ramifications for making mistakes with food allergies, people are too selfish to do anything for the greater good. Hate to have more litigation but a few lawsuits would change the training and standards by resteraunts.

    1. I hear you. In this case, it was a large function and they had to get 450 meals out. So I blame more the management than the server. But never the less, a total PITA.

    2. yep it is a drag. i just got gluten dosed and had a major outbreak with the skin rash and evil stomach pain. but i have been a restaurant worker for years and i know the drill. they make too little money. it is really on me to interview the cook if i must eat and and feel comfortable with what they say. if i cannot do that then it is better to buy a good piece of meat to cook rather than go out.

  2. I am the guilty party that brought back the pizza…I knew it wouldn’t be popular with everyone but literally the only food source. Saw your expression when the boxes came and I immediately tried to sympathize….don’t worry, we will be in more control of the Halloween Party.

  3. I just read this article and I thought it was really interesting, so I thought I would pass it on.

    The entire article may be viewed at http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html
    Gluten Attack: Ataxia
    December 30, 2010
    By Christine Boyd
    Is gluten attacking your brain?
    Gluten ataxia is a neurologic condition characterized by the loss of balance and coordination. However it can also affect fingers, hands, arms, legs, speech and even eye movements. Typical symptoms include difficulty walking or walking with a wide gait, frequent falls, difficulty judging distances or position, visual disturbances and tremor.

    1. Real interesting article Marcia. I’m always amazed at the wide-ranging symptoms of celiac disease. Ataxia almost sounds like a version of MS.

  4. I know, how scary! There are so many things that gluten can do to your body, that we don’t even know about. I learn new things every day!

    1. Agreed. I know I spout about the evils of the “gluten free diet craze: but I am a firm believer that there is something inherently bad about gluten. We just don’t know it yet.

      1. Reading wheat Belly and finding very interesting info about the fact that the wheat for 1950 to 1970 was the beginning of “bad wheat”. 1970’s on…a totally different product. Some of his views lead to gfree as bad for everyone’s diet but the actual change in gluten’s genetic is very interesting.

  5. Like wise with sugar, it’s evil and poison!! That and cigarettes should be illegal. In January I cut out all sugar, and it’s just amazing how many things have sugar. Like gluten it’s everywhere. But that’s another one of my soap boxes… my boyfriend is of the mind that companies don’t lie, it wouldn’t be out there if it was harmful… Can you believe that??? I just get crazy, with the mind set, his and my co-workers that eat crap all day long and think I’m weird for trying to get healthy… what can you do?? It’s a losing battle of wills.

    1. Sugar. Refined white. Brown. Demerrara. All give me wicked heartburn and gastric problems.

      Honey and maple syrup (careful, undeclared milk powder is often used as an anti-foaming agent) do not.

      Refined white sugar is processed using a couple of nasty chemicals.

  6. It takes about that long to adjust, then it’s a piece of cake, haha! It’s not that hard. Really! After about a month you kind of lose interest and can more easily say no. It probably takes years to get it out of your system though.

  7. I’m gluten-intolerant (not celiac) but have days very similar to yours. In fact, I can’t have so many things on a restaurant menu (also lactose-intolerant), what’s the point of eating out? I can always make salad at home!

  8. I’m gluten-intolerant (not celiac) but have had days like yours. What’s the point of eating out if you can’t eat 98% of the stuff on a menu (also lactose-intolerant…sigh). I can always make the salad at home!

  9. Restaurant’s are the worst, it is always so frustrating to try to tell a waiter what you need and to actually get it. Or it not be a salad.. There are alot of chains now that have gluten free menus. Kind of boring but it’s getting better. Olive Garden, Applebee’s, and some local places here.. I have gotten grilled chicken parmagiana which is awesome! Instead of the usual breaded and fried. And veggies on the side, or a salad, instead of pasta. However, when you are traveling it’s so difficult sometimes. How many bunless burgers can one eat.

    1. The Gluten Dude

      How many indeed Marcia. Just had one out last Saturday. I no longer look at going out to eat as a fun “dining” experience; just a fun “social” experience.

  10. Hi there Gluten Dude!
    I was just diagnosed two weeks ago and am finding everything a bit overwhelming. I am a private chef, and have questions/concerns about handling/cooking gluten foods for work. I worry about cross contamination(gluten being air borne etc…) Do you really feel comfortable eating out? I was told by gastro, “no eating out for 6 months” until I start to heal. Like you, my numbers were off the charts, and my dad has esophageal cancer, so my gastro is not taking any chances. I have been “sick” for almost 20 years, was first thought to have lupus, then other immune issues, was never tested for celiac (although looking back, I cannot understand why not) I am very overweight, have been doing everything in my power to lose weight for years, to no avail. I have been eating all my own food (organic) for many years now, only have one meal a week “out” at restaurant. But back in January had very severe case of food poisoning and have been really feeling awful since, which prompted the testing by gastro.
    How thorough were you cleaning out your kitchen, (did you throw away toaster, convection ovens etc….?) I have not told my boss yet about my diagnosis, not sure I will any time soon (cannot risk losing my healthcare now!) thank you for this website and any insights you can help me with! 🙂
    Joyce

    1. The Gluten Dude

      Hi Joyce. When I was diagnosed, we bought all new cookware for me, including a toaster. About 1/3 of the kitchen is gluten free. We’re real careful.

      As for eating out, it’s a risk…there’s no doubt. I go to one restaurant in my town and pretty much get the same thing each time.

      If you work in a kitchen, you need to seriously be concerned with airborne flour. I would think that would present the most danger to you.

  11. Hi, I have just had the blood test as have bad anaemia, tested positive for coeliacs and am awaiting the biopsy. Am worried about the biopsy but keen to start feeling better, have been tired for two years now. Dude, I have a question…are antibiotics absorbed? I have had bronchitis for 5 weeks now and the antibiotics don’t seem to be working., thanks, Hetty.

    1. Good question Hetty. I would say yes because they go into the blood stream. But I shy away from medical advice because I have no idea what I’m talking about on most issues.

      Check with your doc.

      Good luck to you…

      1. Thanks Dude, I think this bronchitis is hanging on because I’m not absorbing vits etc…seems the most plausible explaination, I got the request to book my endoscopy today so get that over and done with and then hopefully will start feeling a bit better when I can cut out the gluten…Hard eating it every day when I know how crappy it makes me feel, but I guess you know all about that?
        Cheers,
        Hetty.

  12. Don’t mind me, I’m over here cringing about eating after 8 pm. Hah! I can relate as a Celiac, that could literally be the story of every time I eat at my in law’s. Even after 4 yrs of being GF. But, I can’t even “think” about eating after 8pm. Oh my, the sick the next morning. Bleh.

  13. Sounds like some of my days. Especially when there are functions to attend, or end of semester parties at the college.

    Now I don’t even drink alcohol (new meds), and so I can’t just get tossed while everyone is downing wine and various appies.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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