25 Things I’ve Learned from Celiac Disease

25thingsaboutceliac

25 Things I’ve Learned about Celiac Disease

It’s been an incredible life long journey for me (and many of you) until I finally got the answers I needed for all my medical problems. It seems as if it were yesterday that I was sitting in a doctor’s office, waiting to be seen, only to leave disappointed and without any hope or answers for what was wrong.

Another doctor, another prescription and still no relief…

But the last few weeks, I’ve had some time to reflect and really think about what having celiac disease means to me and some of the major things I’ve learned over the last 18 months through my own personal experiences and the last 10 months as a blogger. If you have things you learned about gluten-free living or celiac disease, please feel free to post them in the comments so other readers know they aren’t alone!

  1. My celiac disease is not your celiac disease. I can’t emphasize this one enough! We all have different triggers and ailments so it’s incredibly important to pay attention to your own body versus what you hear from me or others on forums and websites. 
  2. Celiac comes with other problems. Endometriosis, thyroid problems, arthritis and vitamin deficiencies for me!
  3. Vitamin & Nutrient levels should be tested on a regular basis to ensure you are supplementing properly to nourish your body with what’s missing.
  4. Gluten will make you feel crazy, act crazy, think you’re crazy and make you paranoid. It consumes you life and there are times when I just have to stop and think… at least it’s managed with food.
  5. It seems to be the only disease people don’t know enough about to tell me how to live my life. Now, gluten-free is another story but celiac disease usually doesn’t get too many unsolicited comments or advice from others.
  6. You have to be incredibly educated about celiac disease, living gluten-free and your body to be safe as much as possible.
  7. It’s essential to learn how to plan accordingly when traveling, dining out or anything out of the norm to prevent you from being stuck.
  8. A gluten-free emergency supply kit is a necessity not an idea.
  9. Poop can tell you so much about your eating habits and health of your body!
  10. I still learn about gluten in things and are surprised by it – tea bags are my most recent discovery!
  11. The gluten-free and celiac community is amazing and I am honored to be a part of it!
  12. I’ve come to realize that packaged gluten-free food is my worst enemy. For my health & my waist line – real foods is where it’s at!
  13. Celiac gave me the opportunity to see who my real friends are and learn the ones who care enough about me to always make me feel safe.
  14. Celiac and fitness is an interesting concept. I’m excited to come out with my program late summer!
  15. I’ve learned to accept the days when my body won’t cooperate and stopped beating myself up about feeling tired, having a headache or achy joints.
  16. Being curvy and healthy is more important than being lean and unhappy.
  17. Living gluten-free doesn’t have to be more expensive – you just have to plan better and eat clean to keep the budget tight.
  18. I’ve learned to look at life as a new adventure, instead of letting it stress me out every day.
  19. My family shouldn’t be burdened by my celiac disease, so I try to bring my own foods to events just to make sure I’m safe and not starving.
  20. Airports are the worst for living gluten-free and with celiac.
  21. Writing and blogging helps keep me sane and warms my heart when I’m able to help you too.
  22. There are no true gluten-free substitutions. Gluten free bread is not soft sourdough bread and it never will be. Gluten-free Oreos are not the ones I’ve learned to love over my lifetime an none can duplicate it either. I’m done trying to find substitutes and instead I’m learning to love new things instead.
  23. I’m proud to take charge of my health and not take no for an answer. I refused to accept that I didn’t have anything wrong with me and I was correct.
  24. I love my husband more now than ever. He has been the most amazing and supportive person through this and I certainly hit the husband lotto.
  25. I love my body more now than ever. All of it. All the problems. All the wonderful things people take for granted, I’ve learned to love and enjoy.

Rebecca

 

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Comments

  1. Sheryl Rex says:

    I have learned that ‘Gluten Guard’ meds, do NOT work on everything. It is easier just to go without.

  2. Atherton Baking Co. says:

    I’ve learned the GF is very supportive and generous. During a very low period I found Karen Morgan & Tim Lawson, they taught me how to be strong! The GF fam shares and supports all over the world! When you reach out, someone is always there!

  3. Charlotte says:

    I’ve learned to be a better and more adventurous cook. I’ve learned that there is MORE to eat as a celiac than I ever ate pre-diagnosis and I was a pretty adventurous eater already even with a ton of allergies. I’ve learned to be my own advocate. I’ve learned that I have some AMAZING friends who support me and my GF life.

  4. I love the 25 things you have learned! Very inspirational for me! I still struggle with many things related to living with Celiac after almost 5 years of living gluten free.

    I also need to learn how to attend events without feeling so awkward when taking my own food. Right now one of my challenges is attending the service’s at church that offer crackers for the Lord’s supper practice. The preacher told me to just bring my own cracker’s. Still I dealt with a lot of guilt for awhile by not participating in the practice at church.

    I do still have days that I do not feel well mainly due to environmental allergies and other food allergies like dairy, soy, yeast and garlic which makes my eliminating other foods important.

    Am still trying to figure out how to get high protein (which of course helps the energy level) Not easy when I am not a huge meat person.

    Thanks for these wonderful comments!

    • Chessie says:

      Mindy, I was diagnosed with celiac disease about a month ago (quite a shock) and I’m slowly climbing out of the deep hole of fatigue I was in. I hear you about protein, because I’ve been vegan for about a dozen years and most of the vegan “fake meats” out there are made with lots of wheat gluten. So, it’s beans, tofu, tempeh, nuts, and seeds for me. I think I can get enough protein, but it will take daily thought. It’s too bad you don’t do soy, but there are lots of other beans and legumes out there.

      Oh, how I loved stuff made with “vital wheat gluten” (i.e., deadly wheat gluten). But yeah, turns out there’s a reason why it didn’t agree with me so much.

      Rebecca, thanks for the 25 tips!

    • Mindy if you eat eggs – Pasturized egg whites are a perfect way to get protein into your diet. They don’t taste like anything and are protein packed. I put them in my juice and shakes. You can buy them in larger packages which are much more affordable through places like Egg Whites International. They come frozen and then you just keep them in the fridge and use them as you wish. Check out my affiliate link here http://www.shareasale.com/r.cfm?B=34887&U=695720&M=4544&urllink=

  5. Do you have a post somewhere explaining:

    “A gluten-free emergency supply kit is a necessity not an idea.”

    What is that?!

    • An emergency kit is something that you would want to have in case there is a disaster like a hurricane, power outage, tornado or fire. It should filled with gluten-free foods that you can consume in case you don’t have access to anything for a few days.

  6. Wow I had never thought about tea bags. Thanks for the tips!

  7. re12: Great to see more celiacs avoid processed food and look into the real food/paleo diet

  8. Amanda Yoder says:

    Love this! So true and so relatable!

  9. I’ve been gluten free since February of this year. It has be a challenge to adjust my diet. I am also allergic to dairy and most grains. I think your comment about making mew ‘friends’ and not trying to substitute gluten free products for old ‘friends’ is an excellent idea. I lean toward a vegetarian diet and buy organic and GMO free products. I also try to buy local as the products are fresher and tastier that way.

  10. I am glad I found this blog. I can relate so much to what you said!

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