Part 4: Your Voice!

Your Voice

It’s that time again! I asked and you answered! In honor of May being Celiac Awareness Month, rather than me just share my experiences living with the disease… this year I want to hear from YOU!

Each week last month I asked a different question about living with celiac disease and the responses I got were incredible! It makes me so proud to be a part of such a strong community and really helps me believe that I’m not alone in this struggle!

If you missed the previous posts, be sure to read everyone’s responses to:

The next (and last) topic of discussion was:

“The best advice for someone newly diagnosed with celiac is _______.”

I wrote a post on this a while ago that I called “Gluten Free… Now What?!”

Five years post-diagnosis I’ve learned a lot and sometimes I’ve learned the hard way. Knowing what I know now and everything I’ve experienced, I would say the best advice I could give someone newly diagnosed with celiac is to relax, learn everything you can on cross-contamination and stay positive!

Now on to your responses!

(I’m keeping all answers anonymous to respect everyone’s privacy)

  • I was diagnosed several years ago and didn’t know anyone else who had celiac disease and it all seemed so overwhelming and taxing. Once I sat down and got my thoughts together I realized that I was pretty much eating gluten free most of the time anyway because I was doing it unconsciously. So my advice would be that it will seem overwhelming but it is totally doable. And labels are so much better than they used to be. And it’s ok to be sad, to mourn the loss of those gluten filled foods. It can be a grieving process. But know there are alternatives and you will feel so much better and be eating healthier. Watch out for the overly processed, nutrient lacking, gluten free foods. Especially if you battle type 1 diabetes. Those processes gluten free foods have a lot of carbs in them, sometimes more than their gluten free counterparts and probably because they are now made with rice flour etc. learn to read your labels and listen to your body. You can be gluten free and feel good and be happy.
  • I was diagnosed last August, so I’m still learning .
  • Buy a new toaster. Don’t “google” too much. Focus on the foods you CAN eat. Find your support system. Count your blessings and be so grateful your “disease” is treated with healthy food.
  • … is relax. Its way more easy than it sounds. We can eat delicious food. Really. Learn all the rules and don’t break them. It’s not worth it. Search for bloggers and people with gluten free diet. Breath. You’ll be just fine. 😉
  • Most gas stations have string cheese if you need an emergency dinner.
  • Never trust someone that something is gluten free of they don’t know what celiac is. When I was first diagnosed I was sick a lot going out and going to friends and parties people assumed it was a fad or diet choice. Though many are aware of what celiac is some still don’t completely understand. I always carry nuts and gluten free snacks just in case. And I would also tell them this isn’t the end of the world good still tastes good intact I think a lot of it is better
  • I was at first it’s a little easier now getting use to reading labels but basically eating lots of veggies went through a period early on where I missed certain foods and sort of was in denial but actually I feel better than I ever have pain free belly is good 😊
  • It’s overwhelming but try to focus on being grateful that celiac is a disease that can be managed with food instead of medicine.
  • Cross contamination at restaurants is REAL!! even if u think u are ordering GF.
  • Be your kids biggest ally. Advocate for them so they can learn to advocate for themselves…this will be a lifelong battle
  • Educate yourself! I read as much as I could about my diagnosis. I found that not only did I need to worry about gluten in my food, I needed to beware of it in my medications as well. Many OTC and prescription medications contain gluten as a filler. Also, items such as shampoo, deodorant, and make up can contain gluten as well. I was thankful that there were so many ways to find useful information for a situation that seemed so overwhelming at the time, but knowledge is power. The more you know, the better you can advocate for yourself!
  • To this day I still research things about celiac/gluten. The best way to take care of yourself is to become knowledgeable do your research! Gluten is EVERYWHERE and the best way to take care of yourself is to learn as much as you can. Its an ongoing process
  • Don’t be tempted to cheat on the diet!
  • Do not search the internet-you will find conflicting information or people’s personal comments that may not be accurate. Ask your physician for trusted sites. If not, it will add to the craziness of navigating this new way of life!
  • What would I tell a newly diagnosed celiac? Your doctor’s ability to help you probably ended with the diagnosis, unless he/she or a family member has celiac. It is hard enough to get that diagnosis in the first place. You are one of the lucky ones if you were diagnosed in under two or three years. Learn to read labels, subscribe to a site like this one, buy books, educate yourself, and get into the kitchen. There are tons of recipes online. There are lots of companies making gluten free products. My personal favorite is King Arthur. Their mixes are fabulous when you don’t have the time or the ingredients to bake something at the last minute. Glutino is also a great company. Read reviews of products at Amazon. If something is good or bad, they will tell you! Be prepared to spend more money, because gluten free products cost more. Make your own food. Meat, vegetables, fish, and fruits are naturally gluten free. Processed food often is not, and it doesn’t taste as good as homemade. It might even be worth the effort to find a gluten free support group in your area. Educating yourself is extremely important, and a top priority. A support group or an online site can tell you what you need to know. In some ways, being gluten free is like keeping kosher must be! You may need your own utensils, condiments, pots and pans, small appliances etc. When I was living with my daughter, I had to replace my waffle iron because she used it to make regular waffles. Unless everyone is gluten free, you need a separate toaster, Most importantly, it’s okay to be grumpy and feel sorry for yourself because your life is changing. It’s a lot to take in and none of us learned everything we know overnight. What isn’t okay is giving up and eating what you can’t eat. It isn’t okay to cheat because it will affect you and the more you cheat, the more damage there is to your intestines. The way I look at it is that I am serving a life sentence, I am not on a diet. Diets end, celiac doesn’t. I probably eat more healthily than people who don’t have celiac. I make better food for my family than if I relied on frozen foods and takeout. It is a lot to get used to, but you can do it. It takes time, patience, and effort, but you can do it, and you’re not alone. We are always here for you. There are so many resources and products that weren’t available thirty five years ago. That was truly the dark ages! Read the archives on this site. There are lists of different products that you can and can’t eat. I consult them frequently, and find them very helpful.
  • Learn about cross contamination. In the beginning I hadn’t even heard of this & my whole first year I kept getting sick & wasn’t understanding why. It’s also the biggest thing friend’s & family members need to be educated on. And food service people as well.

There are so many great tips here and words of wisdom from people living with celiac disease. As today rounds out celiac awareness month, I want to thank everyone that participated in these posts and shared insight on living with this disease!

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2 comments

  1. Kristy from Southern In Law says:

    These are all such great tips! Cross contamination is one of the things I think most newly diagnosed coeliacs aren’t aware of. Something might SAY gluten free – but that doesn’t mean it is! My sister works in a deli and she always has customers coming in and saying “is this gluten free? I/my sister/friend/whatever has coeliac disease” and she has to explain to them that whilst this ham may be gluten free, if she cut it on the slicer where all of the other meats are cut, the chances are it would be cross contaminated.

    • msmodify says:

      Yes I agree! I didn’t learn about cross-contamination until almost a year after my diagnosis and was still always sick and couldn’t figure out why since I was eating “gluten free”!

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