3 Tips for Coping with a Celiac Disease Diagnosis

February 5, 2013 at 2:03 pm 4 comments

Recently, I posted this question on the National Foundation for Celiac Awareness (NFCA) Facebook page: Do you agree that people with celiac disease or non-celiac gluten sensitivity (NCGS) can feel excluded from social life?  I posted the question after seeing an article on Celiac.com from a gluten-free college student who feels like celiac disease can isolate her from social activities.

I was blown away by the response on Facebook.  Obviously, this is a hot topic.  As of now, there are 81 comments in a thread that’s still active.  It’s so interesting to see all of these comments.  Some people adamantly disagree that celiac disease impacts their social life while others struggle to stay included in activities and events.  There were lots of parents concerned for their young children with celiac disease and the implications it has on them socially, both now and in the future.  It appears that many people believe the impact of a celiac disease diagnosis directly correlates with your attitude about the diagnosis.  Positive attitude, positive life with celiac disease.

No matter which side of the fence you fall on, there’s no denying that celiac disease changes your life once you receive the diagnosis.  Here are my top 3 tips for coping with a diagnosis of celiac disease or NCGS:

Read. Then read more.

There is no better way to navigate the gluten-free diet than to learn and understand all the ins and outs of the lifestyle.  The more you know, the more you can keep yourself in good health.  Learn what gluten is, how it affects the body in people with a gluten-related disorder, where gluten can hide and how to prevent cross-contamination.  It might sound intimidating at first, but NFCA is here to help.  Browse www.CeliacCentral.org to get started.

Get support.

Do you know one of the great things about being gluten-free?  The online community is amazing!  There are so many advocates on the internet who can help with everything from delicious gluten-free recipes to lifestyle tips.  NFCA is always around to answer questions and provide resources on Facebook, Twitter and the new Celiac Central community on Inspire.com.  Check them out to connect with other people who are living gluten-free.

Get more support.

The gluten-free diet can be confusing at first.  There are a lot of gluten-containing products out there that you might be surprised to find out actually have gluten in them.  (I was probably most surprised to find out soy sauce and some chicken broths have gluten.)  With so many things to look for on a product’s ingredient label, it can be really frustrating at first.  I highly recommend seeking support from a registered dietitian that fully understands the gluten-free diet.  They’ll help set you up with the tools and knowledge you need to get started.

If you don’t have access to a dietitian (or even if you do), check out the book Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case, RD.  It’s one of the most helpful gluten-free resources available.

Feel free to comment with some of the difficulties you’ve faced after the diagnosis and how you’ve learned to overcome them.  You’ll certainly be helping out the newly diagnosed reading this post!

– Alicia

Entry filed under: Alicia. Tags: , , , , , , , .

A Great Gluten-Free Day! Healthy Times Ahead

4 Comments Add your own

  • 1. Amanda  |  February 5, 2013 at 2:44 pm

    I definitely believe your attitude affects how much Celiac Disease affects your life.

    That being said, there are still social situations I HAVEN’T encountered yet, which I do get a bit anxious about: wedding receptions, dinners after funerals, etc. Basically any sit-down dinner with a LOT of people, not much meal flexibility and not wanting to make the occasion about me. If anyone has tips on those situations, I’d love to hear them 🙂

    • 2. Jenn R  |  February 6, 2013 at 12:37 pm

      I agree. I am newly diagnosed and haven’t run into this. But my husband and I do a lot of dinners out with friends and family…..Not sure what to do??? Those who are experienced please respond and give us direction. Peace.

  • 3. Jessica Meyer (@ATXglutenfree)  |  February 5, 2013 at 7:34 pm

    Great tips! Reading and then reading more is definitely important. Gluten can be found in so many things so it’s important to educate yourself and become an “investigator”.

    You can also download Locate Special Diet mobile apps

  • 4. Melissa  |  February 5, 2013 at 8:05 pm

    I totally agree that ones attitude depends on how greatly celiac effects your life. I personally keep a very positive outlook because, well, I have no choice but to accept it. My family and friends make accommodations for me and are very supportive. A support system is key. I as well have not encountered any social situations such as weddings or any event with a sit down dinner yet so I know that will turn into a disaster for me and I don’t know how to cope with that so I’d appreciate any advice or tips on that issue.


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