chronic illness

5 Reasons Why Celiac Stinks

I’ve been a “Celiac” for almost 18 months know and while it seems that I’ve gotten a pretty good hang of the whole gluten-free scene, this week has not been a good celiac week. Its like I’ve reverted back 2 years. Ok – I take that back. I haven’t reverted back. I am still doing all I know to do to avoid gluten but instead it seems that gluten has sought me out like a hawk to find ways to ruin this week. In this joyous spirit, I have come up with this lovely post on 5 reasons why Celiac sucks (I know this is supposed to be a “find joy in all things” type blog but I’m just going to be real with you tonight).

1- No one wants to have you over for dinner. Its scary for someone to try to prepare a meal for you when they have the impression they can have you in the floor sick especially when that impression can be very much a reality. Some Celiac patients can tolerate a certain level of gluten and can “cheat” every once in awhile by stealing a bite of a breadstick or some other gluten-filled product. Others can get very sick with a tiny amount of contamination (I fall in the latter group). So I understand that I can be very daunting to try to entertain a gluten-free guest, especially if you are not gluten-free yourself. After my surgery, we told families that wanted to prepare meals just to prepare for my husband and daughter as they wanted to help but didn’t quite know how. I totally get it. It just still sucks.

2- People don’t necessarily like to go out to eat with you either. There are definitely restaurants on the “do not eat” list if you have Celiac disease. Some restaurants are really great about trying to cater to individuals with food allergies and provide gluten-free and other allergy-free menus. Other places though would rather not have the responsibility of stating that an item is gluten-free when there is always the chance of cross-contamination so they refuse to verify either way. A group was looking at going to a pretty well-known place this weekend but I had to say no because I think I would have inhaled gluten just being in the place (ok – I am totally exaggerating but you get the point). No fun having to be a party-pooper.

3- Having to check labels on EVERYTHING. I read the hairspray bottle before buying to be sure it doesn’t have wheat protien. I avoid Aveeno products because of oats. I scan and rescan cereal boxes. Even if I have eaten it before, I still have to recheck as products can change their ingredients at any time. Many times I cannot buy store-brand products. For example, Cocoa Pebbles are gluten-free. The store-brand version are not. There are certain foods, like my beloved candy corn, that are gluten-free themselves but are often processed on the same equipment as gluten-filled products so it takes the off the safe list. It would be nice to be able to grab something off the shelf.

4- Contamination effects ususally hit at the most inconvienent moments. Nothing is more embarrassing than eating lunch with your supervisor for your birthday and having to excuse yourself mid-sentence. Enough details there. End of story. Totally blows.

5- Holidays. Yes there are gluten-free recipes out there but let’s just face it – many of them aren’t that good. I went through three different gluten-free sugar cookies recipes before giving up. One set turned into bricks. Another fell apart if you breathed on them. I want a yummy sugar cookie darnit! Oh and holiday pies. And cinnamon rolls on Christmas morning. And Krispy Kreme donuts. I realize that Krispy Kreme donuts have nothing to do with the holidays but I had to slide them in there somewhere.

If you have Celiac, what are things that you find the most annoying? Or if you personally don’t have celiac or another food allergy but have a friend or loved one that does, what do you find challenging about finding ways around it?

9 comments on “5 Reasons Why Celiac Stinks

  1. Allison says:

    I don’t have celiac, but I do get the whole food allergy thing. I once slapped a woman’s hand because she gave my son a Goldfish cracker not realized he was dairy allergic. I’ve never chastised another mom before, but I sure did that day!

    I would LOVE to go to a gluten-free restaurant with you! Name the date and time!

  2. Sarah K. (The Mama Pirate) says:

    Can I say again real quick how awesome it was to meet you at Bloggy Boot Camp?

    I really don’t know that much about celiac disease. I am so sorry, it sounds so difficult. What did you wind up doing for dinner at the Boot Camp? What (if any) chain restaurants are gluten free friendly?

    • Jamee says:

      It was totally awesome to meet you too! Thankfully at BBC I had a wonderful gluten-free lunch (rice pasta) and for dinner, we ended up lingering so long we just went to the restaurant downstairs which only had 1 GF option but thankfully I had cookies 🙂 Two of my favorite chain restaurants are Outback & Fatz. Both have really good gluten-free menus and really seem to go out of their way for customers with food allergies!

  3. Mamie says:

    I’ve had to do the same thing with meals after my surgery.
    I don’t have celiac but Crohn’s disease makes it hard to eat a lot of the times. One day something will be fine and the next time it could cause problems. I get nervous at a new place, and have to locate the bathrooms as soon as I get there. Food is such a big part of life and it’s hard when you can’t just sit and enjoy it.
    PF Changs & 31 Main in charlotte both have gluten free menus.

  4. Christy_TheSisterhood says:

    My son has sensitivities to lots of foods which is why we’re on the Feingold diet. I TOTALLY get you on why it sucks to be on a special diet. I feel so bad for my son. Thankfully if we slip, we only have to deal with a behavioral reaction, and not usually a physical reaction, but it’s still so hard. The scariest thing I’ve learned is food companies do not have to list all the ingredients on the labels! The Feingold association does extensive research and puts together a ‘safe’ food guide that has become a second bible in my family.

    I hope you’re feeling better, Jamee!!

  5. Jen says:

    It is so socially isolating to not be able to eat with people. I just attended a bonfire where the hostess made two wonderful g/f soups and I could actually eat with everyone. It nearly moved me to tears.
    I was so appreciative. Thank you for bringing awareness to this subject in a positive manner.


  6. […] I have really really considered whether it would be worth it but then I think back to instances like this one I blogged about but I think its best to stick with the gluten-free […]


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