So what’s your Celiac story?

I figured before I would talk about any gluten free products or restaurants or rant about shady “gluten-free” encounters, I would let you all get to know a little about me. There’s something floating around Tumblr. for people with illnesses to talk about their Celiac disease – and what’s more fun than something you steal from Tumblr.? I hope you get to know a little about me, my struggles with Celiac, and my (hopefully) charming writing style through this introductory post.

1. The illness(es) I live with: Celiac’s disease, gastroparesis (or so they think), osteopenia, and a bunch of other random stuff that they think is all symptoms of ceilac.

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: Since forever, but I really only think it was triggered at the end of the year in 2009 when I had a really bad stomach virus.

4. The biggest adjustment I’ve had to make is: Learning how to cook at home – the diet is obviously the biggest adjustment, but learning about all the hidden gluten and cross contamination makes me frightened of most restaurants.

5. Most people assume:

  • I’m being dramatic or obsessive compulsive when I say I can’t eat at a certain restaurant.
  • that I’m doing it to lose weight/get in shape (I gained weight on a GF diet, I finally got nutrients)
  • that I’m really hard to go out to eat with (I kind of am)
  • That I’m overly cautious about cross contamination (they just don’t know what it is)

6. The hardest part about mornings are: waking up and planning what you’re going to eat today, and how your meals will revolve around where you are and what’s available.

7. My favorite medical TV show is: Any and all of them, but that has nothing to do with Celiac. I’ve loved medicine since forever, but hate the idea of cutting up people so that’s why i’m not a doctor.

8. A gadget I couldn’t live without is: my iPhone, duh. Or MacBook (I guess I could always make Skype calls?)

9. The hardest part about nights is: dealing with my anxiety (probably from my Celiac disease) and not sleeping through the night ever.

10. Each day I take __ pills & vitamins: Holy crap. A lot. I take motillium (domperidone) for my gastroparesis. I take probiotics up the yingyang. I take multivitamins, and vitamin D because I have osteopenia (thanks Celiac disease), and naturopathic amino acids to balance out my anxiety – oh, and digestive enzymes after meals.

11. Regarding alternative treatments I: used to do acupuncture but got no relief. I’m a big fan of natural remedies if they work…I’m always up for the next alternative treatment other Celiacs are doing. I even did some herbal tea remedy. It tasted like dirt.

12. If I had to choose between an invisible illness or visible: Well, they both suck. Sometimes I think it’s easier if you have a visible illness because people know you’re not faking. But, it’s only Celiac disease, it could be WAY worse. I’m very lucky that I don’t have anything (knock on wood) that’s really scary. Yes, Celiac is lifelong, and we’ll always have to deal with people doubting it’s validity – but it’s nothing too much that we can’t handle.

13. Regarding working and career: It’s hard because people think it’s just a fad diet or a simple food allergy and they don’t know the severity of cross contamination. They think I’m “special” and people thought I was being hoity-toity for ordering special meals or asking for separate meals when it came to team meetings over lunch. Or they looked at me funny if I didn’t eat at a restaurant for a client meeting. I always felt like I had to explain myself and describe the disease for 10 minutes to get people to understand that I wasn’t just being a picky a-hole.

14. People would be surprised to know:  How anxious and embarrassed I am over my disease. It really does suck to ask the waitress 100 questions before I order. It really sucks that I can’t kiss my boyfriend before I ask if he brushed his teeth. I hate having to look at menus before I go anywhere. It’s not fun, I don’t enjoy it, and when I see the look on your face like “there she goes again being so weird” I feel like such a loser. I hate this too you know…

15. The hardest thing to accept about my reality has been: That it’s forever. I hate the word forever. I hate having to be this detailed about what I eat for the rest of my life.

16. Something I never thought I could do with my illness that I did was: cook at home! Make things with vegetables I didn’t even know about before I was forced to look at everythign I ate.

17. The commercials about my illness:  This ain’t rheumatoid arthritis, there isn’t Sally Field speaking for me. There’s little to no talk about Celiac on ads, much less in TV – although I think Mrs. Hasselbeck changed that for us.

18. Something I really miss doing since I was diagnosed is: Feeling normal in a restaurant. Eating pizza and beer at a bar with everyone else. Eating girl scout cookies.

19. It was really hard to have to give up:  Food – duh. Although i’ve found a sub for almost everything, there’s just no replacing wheat. It’s so tasty and it’s in everything. I miss real sandwiches with ooey gooey gluten bread. Don’t get me wrong, I’ll live without it – but I remember how good chocolate chip cookies from Paradise Bakery taste. I will NEVER forget.

20. A new hobby I have taken up since my diagnosis is: Being obsessive compulsive about restaurants, blogging and starting Celiac and the Beast. And cooking!

21. If I could have one day of feeling normal again I would: eat at Olive Garden and then binge on chocolate chip cookies. That’s what normal people do, right?

22. My illness has taught me: how to nourish my body with whole foods.

23. One thing people say that gets under my skin is: There’s too many to name. People give me weird looks when I say something about cross contamination, or I get on my gluten-free soap box. I feel really really judged, when really, I’m just trying to take care of myself and heal after 27 years. Also, people who tell people I’m allergic to wheat – it’s deeper than that!

24. But I love it when people: genuinely want to learn about my disease, or want to eat a gluten-free meal with me. And honestly care about the term ‘lifelong” autoimmune disease.

25. My favorite motto, scripture, quote that gets me through tough times is: You go girl. No, not really, I just can’t think of one. Maybe Pinterest will help me out with that. Anyone have a cool motto for me? What about “Celiacs do it gluten-free?” I saw that on a sticker once.

26. When someone is diagnosed I’d like to tell them: Oh my god, when people first get diagnosed, they think that they can just avoid bread and beer. they don’t understand that gluten is in EVERYTHING and that they need to check every ingredient, even hidden ones. Dude, WHO IS YOUR DOCTOR?!?! Or that they self-diagnosed and they claim they are a Celiac without going through the rigorous testing. Make sure you are tested! It’s so important!

27. Something that has surprised me about living with an illness is: That Celiac has such a great community of people who genuinely want to watch out for each other.

28. The nicest thing someone did for me when I wasn’t feeling well was: Every day my boyfriend does something amazing for me – like help cook a gluten free meal, or run errands for me when I’m cooking, or helping me out when I don’t feel well. The nicest thing he’s done is go completely gluten-free (when he’s around me at least) and letting us have a 99% gluten-free household. My parents are also really awesome and helpful with all my doctor appointments and endoscopies. Although they don’t eat gluten-free (and I think they should, but I know how hard it is to change old habits), they are always open to eating a gluten-free meal with me or keeping gluten-free food at their house when I come over. I am really really lucky.

 

Do you have a Celiac story? Or are you a Celiac supporter? Leave a comment and introduce yourself.

 

Welcome to Celiac and the Beast!

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