Part 4: I want to hear from YOU!

It’s that time again… I want to hear from YOU! Thanks to everyone who shared your thoughts on:

I’m excited to share with you everyone’s responses! As a reminder, Celiac disease awareness month is coming up in May, so I thought I would compile various answers from you and create different posts on a few topics relating to living with celiac disease.

I want YOU to share YOUR feelings about living with the disease… this way we can see we’re not alone!

The next thing I want to ask you is:

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

Your answers will be published in a blog post in May and will be anonymous, so if you’re uncomfortable leaving a comment here, please feel free to email me (kristina@msmodify.com).

I LOVE hearing from you and I know that your responses truly help others living with celiac!

Thanks for your help!

xo,

Kristina

 

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8 comments

  1. Lisa Lang says:

    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!

    • msmodify says:

      This is good advice! I know at first I would search the internet and find all kinds of info and would get freaked out! Thanks for sharing! 🙂

  2. Mari says:

    I honestly don’t mind having celiac disease most of the time. My husband is disabled, so we don’t eat out most of the time these days. For special occasions, we invite people to the house and that way I can control what is cooked and served. On the occasions when I am out with family and friends, and they want to eat out, I am used to preparing ahead so I always carry trail mix or a breakfast bar in my purse. No one even thinks twice about it anymore. I am somewhat unconventional at times, so people just assume it is one of my quirks, and shrug it off. The family and close friends know what it is. They do try to pick a place where I can safely eat, but the company is more important to me than where we are going, and let’s face it, unless the restaurant is one of the totally gluten free ones, the probability of getting glutened is there. Having this disease keeps me more focused and aware. It has taught me to remain vigilant and pay attention to what my body is telling me. I have been able to discover more foods that I can’t eat simply by paying attention.

    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 home made. It might even be worth the effort to find a gluten gree 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.

    • msmodify says:

      Thanks Mari for sharing all this wonderful info! I agree with you that your doctor probably won’t help much more past the diagnosis and monitoring labs, etc. I know I used to get so upset with my doctor because he never informed me of the daily challenges of transitioning to a gluten free diet, but then I realized he honestly didn’t know since no one in his family has celiac.

    • msmodify says:

      Celiac is so different from other diseases since food is involved and gluten is in so many things! I hope people find this helpful! I would love to hear the thoughts of the young lady you know from church that has celiac.

  3. Diane says:

    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.

    • msmodify says:

      I agree Diane! I think by far this was the biggest piece of advice I needed when first diagnosed. I too, was following a strict gluten free diet but was getting sick constantly! I would say it was over a year until I learned about cross-contamination. I also had had no clue gluten was in cosmetics, toothpaste… basically most common things I used daily! Thanks for sharing!

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