Diagnosed With Celiac Disease? Now What.

Even though it was over six years ago, I remember the call from my doctor confirming that I indeed had celiac disease like it was yesterday. After both the blood tests and the upper gastrointestinal endoscopy, it was set in stone. I finally had an answer.

With the answer, however, came a million questions. Now what? Where do I begin.

As someone who has lived and learned, I would like to offer some advice to those newly diagnosed, because I remember what it was like to be in your shoes. The stress, confusion, and frustration, is something I would never wish upon anyone, and frankly, I wish someone would have been there for my parents and I when we were going through this massive learning curve.

Create A Plan Of Attack

First and foremost, don’t do what my mother and I did. We went straight to the grocery store. We cleared the shelves of any and everything that was processed and labelled gluten free. While, yes this is an important part of the process, you need to breathe first and soak it all in.

Instead, sit down with your family, and formulate a plan.

As I am sure many of you have — as I certainly know that we did — as soon as we heard there was even the slightest chance I had some sort of gluten intolerance or celiac disease, we went straight to the library and the internet to do our research.

(One of the best and most comprehensive guides I’ve come across is from Beyond Celiac.)

With your loved ones, you will need to sit down and discuss how this is going to impact you and the entire family, because there’s a lot that needs to be considered.

Will everyone abstain from gluten? If not, how can we ensure the kitchen is safe? What food staples must we have in the kitchen? What cookware and utensils will be need to buy? What recipes or meals can we prepare – will we cook separate meals, etc.? Understanding how to read food labels?  

The list goes on and on, and it is incredibly daunting.

So, I’d suggest getting everyone involved. Give everyone a task and present your findings to the entire family as a unit. It not only will get everyone up to speed, but it will give the celiac reassurance that you’ve got his/her back on this.

Revamping Your Lifestyle.

Once you and your loved one have a family meeting, it’s time to take action. Based on your decision, you will either need to remove all food and contaminated cookware from your home or create a list of what you will need to ensure the celiac will have a 100% safe kitchen.

In most cases, mine included when I lived with my parents, it’ll likely be the latter. So my suggestion, is to compile a few lists.

Start with the utensils and cookware you will need to supplement. Here’s what you will likely need:

  • A designated array of new pots, pans, skillets, and baking sheets of varying sizes
  • New Tupperware to store leftovers
  • New silverware and baking utensils — spatula, whisks, measuring cups, tongs, meat thermometers, etc.
  • New plates and glasses
  • New cutting board
  • New toaster or convention oven
  • New dish rags and sponges for cleaning dishes
  • I’d also recommend a new oven rack and even a designated section of your grill that will remain free of any cross contamination

Once you compiled these new cooking utensils, it key that you store them in a specified gluten-free storage container in your kitchen. I’ve also found that most people label these gadgets with a bright colored piece of duct tape to further clarify this tool is for gluten free use only.

Next go for the pantry and fridge.

If you aren’t completely purging gluten from your household, you’ll need to ensure that you have a few additional extras, aside from the new and current groceries, you have. This mainly deals with shared condiments.

For example, things like peanut butter, jams, mayo, or any sort of spread that a knife that gluten has come into contact with will need a supplement if the celiac will also consume that particular food item. Like the pots and pans, I know we labelled our jars with painters tape to ensure that these foods were safe in our homes for me to use.

From here, comes the gluten free foods you’ll need to buy. 

This obviously will vary based on the current diet habits of the newly-diagnosed celiac. Here’s a great starter list for those new to the lifestyle and additional one with safe brands to check out. Obviously edit accordingly based on your preferences and level of expertise in the kitchen.

Keep in mind that it’s important when you start out to have balance.

If you were one who would eat cereal for breakfast or loved a sandwich at lunch, try out the supplemental GF options at your local grocery store. It’s important to remember that you don’t have to entirely cut out the foods you love.

Though, celiac disease is a life sentence. It’s not a death sentence.

Consult a Dietician and Find A Support Group.

Once you’ve bought all the tools and goodies to stock your kitchen, it’s time to get down to business and embrace the next step – living with the lifestyle change.

When I was diagnosed, I was two weeks out from starting college. I immediately contacted the University to find a dietician and a doctor who specialized in celiac disease. I met with her at school once a month and we created meal plans. She even got me working with the school’s dining hall to ensure I had meals prepared in a gluten-free facility so I wouldn’t have to worry. Bradley really made the transition painless for me.

As you will see, there’s a lot to take in. It’s essential that you seek medical support to ensure you are up to speed and maintaining a healthy and balanced diet.

On top of the medical guidance, seek out emotional support. These days, celiac disease and other autoimmune disorder support groups are much more common than when I was diagnosed.

It’s essential for the celiac to chat with someone in his or her boat. It’s nice to know that you aren’t alone, because in reality you aren’t. 1% of the entire population — about 1 in 100 people have celiac disease.

Keep in mind too, those experienced celiac pros, know the brands to try and have recipes and insider knowledge disposable at your finger tips. Talk about an added bonus!

Get Active and Advocate for the Cause.

Now that you’ve tackled celiac disease head on, it’s time to advocate.

Though you are now a newly-found expert on all things gluten free, most of the population is not. Educate your family and friends and spread awareness for the cause.

The more we educate those who aren’t aware, the easier life will become for those of us who do live with this autoimmune disease. If we work together, tomorrow will be better and brighter for all.