Reflections On Life With Celiac Disease (year 2)

I need to vent a little bit…

I haven’t been feeling that great lately.  I know what it is.  During the weekends I am usually on the go and rarely have time to prepare my own meals.   As much as I say at restaurants:

“I have celiac disease, I am gluten-free, dairy-free and shellfish-free, please notify the chef.  Also please avoid cross contamination by asking the staff to either change out their gloves or mix my food in clean bowls and avoid breading, sauces, and spices”

…I still find a way to become sick.  During the week it is super easy to stay gluten-free I usually make all of my meals.  I still manage to get sick even when I am super strict, which makes me wonder:

  1. Is it true what they say about gluten and coffee? 
  2. Should I avoid my Diet Coke because there could be gluten in the caramel coloring? 
  3. Is it true what they say about quinoa and other grains still aggravating celiacs? 
  4. Is my non-dairy creamer making me sick?
  5. Do I need to worry about the meat I eat, do I need to be concerned if they were fed grains?

I am not one of those people who knows exactly what makes me sick.  I typically eat the same thing each week and rely heavily on vegetables and salads.  After two years with this disease I am still perplexed and frustrated.  I miss convenience and I miss being able to eat without having to describe what is wrong with me. I don’t miss bread or pizza (well maybe a little) or stuff like that, I am just frustrated that gluten-free does not always mean gluten-free for all.  Packaging is confusing and cross contamination is not always labeled or taken seriously.

Thank you for letting me share- I promise to post something positive next time…

What is hard for you? Do you have any advice for me?


Filed under Diagnosis

7 responses to “Reflections On Life With Celiac Disease (year 2)

  1. Pingback: Reflexions On Life With Celiac Disease (year 2) « Gluten Free … | Allergy to Wheat - Symptoms Treatment

  2. Bethany

    I feel your pain. I was just recently diagnosed and feel like I have no idea what I am doing or if I will ever get a handle on it…venting is ok and helps.

  3. Margaret Meier (904) 626-3103

    Can you please help me? My sister-in-law who is elderly with this disease needs someone who specializes in this food prep to prepare meals for her while her husband recuperates from surgery. He had always been helping her with this. Please call me to discuss if at all possible. Blessings! Margie

  4. Jen

    This post felt like I wrote it. I don’t miss food, just being able to go out and eat with friends and socialize. The confusion is soo frustrating, I’m scared to eat not at home. My husband and I just got back from PR, thank you for your suggestion to try out Marmalade. The entire trip I basically ate nothing until that night. Thank you.

    • I am so glad you went to Marmalade. I cried when they actually knew what I was talking about and could accommodate me easily. I have just learned to enjoy cooking and try new recipes.

  5. victorsfriend

    I found your blog while looking for gluten-free suggestions in Jax. My son is on the spectrum, and we’ve gone GFCF (and Feingold, which eliminates a lot of additional foods). He is almost 2, and we’ve been strict for about a month, and I’m terrified to eat out with him. His birthday is in two weeks, and while I know there are GFCF options for him, it makes me sad that my sweet little boy can’t have a normal birthday cake. So, I know it’s hard, but you can do this.

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