Pet Peeves of Being a Celiac (Celiac Disease Awareness Month)

If you have Celiac Disease (About 1% of the population), you are well aware of the frustrations that come with it. We know not everyone is as well educated as someone who has the disease, but it does help when a family member or friend, does some research to better understand your disease. Realizing that Celiac Disease is an auto immune disease …. NOT an allergy.

Celiac disease can be a struggle, and we know many people don’t quite realize how serious this disease is when not following an extremely strict diet.  Many people think if you have a bit of gluten here and there it won’t kill you, when in reality it is harming you in some way or another. A build up over time of having crumbs or unknown gluten here and there, can lead to more serious problems even if you may not have any symptoms right away.  Ingesting gluten leads to many problems such as osteoporosis, infertility, anxiety, depression, anemia, hair loss, weight loss or gain, mouth ulcers, arthritis, elevated liver enzymes, and the list goes on. It’s not always the diarrhea or bloating that everyone assumes are the only issues you have with the disease.

One of us is also pregnant, so it is VERY important to remember if you are expecting, you need to be as careful as possible and not ingest any gluten. Women with Celiac Disease are more likely to have a miscarriage or give birth prematurely to an under weight baby. If you are accidentally getting gluten in your diet, you will have degeneration of your villi which leads to nutritional deficiencies, and this means your baby is not receiving the nutrients it needs.

At one time or another you probably have left a dinner or family gathering crying in frustration, because you were not able to eat a single thing. You leave hungry and wish there was more you could have eaten. Best thing to do in times like this is to bring something extra with you, such as a granola bar to hold you over until you get home. Same goes for traveling, as we all know some airports and restaurants do not cater to gluten free folk.

Below we have listed some frustrations we all can relate to, and would love to hear from you guys if you have any to add!

1. When a Menu that does not have any items listed as gluten free but are available and you have to keep asking over and over which ones can be modified. Memory sucks.

2. Walking into a restaurant and asking if they have a gluten free menu and they reply “What’s gluten again?”.

3. Eating out somewhere with a group of people and out of all of the dishes available you are only able to eat one item.

4. Having to say you have Celiac Disease and are not gluten free by choice, every time you eat out.

5. Traveling with a picnic because roadside restaurants that are gluten free can be hard to find.

6. Going to the grocery store to buy safe food, while everyone else sits in the restaurant eating yummy looking gluten.

7. I made this cake or desert but you can’t have it and it tastes awful.

8. You’ll be fine it’s all in your head.

9. If you just have a little gluten it will help you build a tolerance for it.

10. A couple of crumbs won’t hurt

11. When a product says gluten free and then in fine prints says manufactured in a facility that processes wheat – may contain wheat.

12. When a carefully made gluten free dish is subjected to cross contamination

13. When you wake up the next day violently ill and have no clue where the gluten came from.

14. Wait, I’ll just pick those croutons off your salad

15. When someone makes the comment “I could never give up bread”.

16. When someone who can eat gluten eats your last slice of gluten free pizza, when there is regular pizza still available.

17. When you are told to bring your own bread to a restaurant because they do not offer gluten free bread.

If Celiac Disease runs in your family, it could be very possibly you could test positive as it is genetic. If you have unexplained infertility or have any of the symptoms, please go to see your doctor and have a blood test taken to find out if you have high levels of Transglutaminase Antibodies (tTG-IgA).

  1. Sara says:

    Thank you for this!! I’ve been really struggling with my frustrations around celiac lately. I head to New Orleans tomorrow for a conference and half my suitcase is filled with gf snacks and protein shakes in order to get through the trip. I haven’t eaten in a restaurant in over a year :-(. People really don’t understand the nuances and it becomes exhausting to have to explain! I appreciate you.

  2. Carla Balzun says:

    I can absolutely relate to all of your comments. Although I was only diagnosed 11 years ago (at the age of 45), it must be terrible for young moms with kids who suffer from celiac.
    Another of my pet peeves is when menus call something ‘gf’ but it is fried in the same fryer as EVERYTHING ELSE – and unless you ask, they wouldn’t bother telling you. Also, when food on menus is identified as “gluten friendly”… what the heck does that even mean?? Oh well… 🙂

  3. Rob Parkin says:

    All the above so true. I hate being invited to dinner because it just becomes complicated trying to explain all the ins and outs. I hate functions….I call them GF …gluten functions!…..and restaurants just don’t seem to understand. Saw a waitress cutting a gf cake with a knife that had just been used to cut a standard cake. I stick to clean food that is obviously gluten free and only eat at home. You can’t trust anyone!!

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