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I’ve Been Diagnosed With Celiac Disease, Now What?

Getting diagnosed with Celiac Disease or any other condition dealing with gluten such as non-celiac gluten sensitivity can be an utter and complete shock to your life, as you know it. I think the majority of celiac would say it is OVERWHELMING.

All of the sudden nothing in your house seems edible, you’re wondering where the gluten is hiding, you’re wondering if you just need a whole new kitchen, how you’ll ever go out to eat again, and most importantly, if you’re like the rest of us, you’re wondering if eating gluten free really is going to make you feel that much better?

First off, IT IS GOING TO MAKE YOU FEEL A WHOLE LOT BETTER! And you are not alone in thinking all of these thoughts. I sure as heck remember how I felt when I diagnosed; wishing there was someone I could talk to, someone who could understand, or someone who could just guide me in the right direction.

I barely even remember the doctor talking to me about Celiac Disease. It was more or less along the lines of, “It’s official, you’ve got CD.” And then I was sent home, pictures from my endoscopy in hand.

So, to ease your struggles and hopefully hundreds of others, I wanted to let you in on a few tricks that really helped me over the years. Tips and tricks that I wish I would have known from the very start!

1. Educate yourself and reach out to others.

The Internet is a very powerful tool, especially when used for the right reasons. Get online (or go to your local library) and read everything there is to know about CD. Celiac Disease goes far beyond just eating a gluten free diet and it is up to you to educate yourself.

On this same note, reach out to others in the GF community; we all want to help! I am being totally serious. There are hundreds of GF support groups that meet monthly and even more groups that are available to you daily through Facebook and other online resources. To be honest, I can’t even keep up with these groups because they are SO active! Get involved in the community and that will be just one more way to educate yourself and hopefully learn from others mistakes!

Also, check out Gluten Free 101 and The Disease Behind Gluten Free for more insight from me. I’ve also included links at the bottom of this page for further resources.

2. Educate anyone you live with or eat with often.

One of the most frustrating things about CD is the constant need to explain to everyone around you why you need to eat gluten free and why one crumb matters. And yes, if you are brand new to CD, ONE CRUMB DOES MATTER. So, I have found the best way to mitigate situations like these is to educate the people you spend the most time with so they can also advocate on your behalf.

My husband, my mom, my dad, my brother and his girlfriend, and all of our closet friends not only know what CD is but they are aware of how seriously destructive it can be if I consume any gluten. I feel safe eating with any of them at any time, even in restaurants, because I know they’ve got my back. Make sure you surround yourself with people who care.

3. Purge your pantry & deep clean your kitchen.

I’m not going to lie, this is just as exhausting as it sounds! I have to be even more honest and say that the best thing that ever happened to me on my CD journey was be able to move into my first house. It was seriously a fresh start. But since most of us aren’t moving anytime soon, here’s what you can do to clean up your kitchen.

First off, throw away all foods that aren’t gluten free. If they are unopened, consider donating them to your local food bank or women’s shelter, they are always in need of food.

Secondly, you will need to get rid of anything that’s plastic or wood. Gluten tends to hang out in cracks that occur in plastic/wood products over time and as long as you keep them around, you run the risk of cross-contamination.

Lastly, you need to deep clean every drawer, shelf, counter, and appliance in your kitchen! Like you should be scrubbing so hard that you’ll be sweating – I mean seriously sweating, this process will be a work out.

For a more detail oriented, step-by-step guide to cleaning out your kitchen, read How To De-Glutenize Your Kitchen.

4. Start with fresh, naturally GF foods.

Going gluten free can be a nightmare at first. You are absorbing loads of new information that you can barely keep straight, you probably still feel like shit most days, excuse my French, and you’re still trying to wrap your head around changing your entire
lifestyle! It is not easy.

So make it a little easier on yourself by eating fresh, naturally GF foods to begin with. This mean fruits and veggies, nuts, eggs, plain meats and poultry, simple seasonings like olive oil, salt, and pepper, and grains such as rice or quinoa. It sounds basic because it is basic. But it will give you a chance to eat well while exploring other GF options and learning the world of ingredient labeling.

To tell you a short story of my own, when I first went gluten free I actually also went dairy free, sugar free, egg free, and nut free. For the first week I did a liver cleanse and juice fast. I was being monitored by my doctor at this time as well so I felt very safe doing so.

After one week, I started introducing ONE NEW FOOD into my diet every four days. I started with eggs because I love eggs and thought they’d be a good source of protein for me as I carried on with this diet. After four days and no reaction, I added almonds (not all nuts, just almonds) and again, I had no reaction. I went on like this for nearly three months, introducing just one new food at a time.

I kept a food diary and recorded how everything made me feel. For example, I found I could eat Parmesan without a reaction but cottage cheese gave me the worst stomachache. Having a glass of milk had me achy and all sorts of gasey but yogurt was okay. I then found that soy yogurt made me feel even better than dairy yogurt and just recently, I found that cashew yogurt actually makes me feel best.

I won’t lie and say this was easy or that it wasn’t a lot of work because it was. I spent nearly every second I wasn’t working either at the doctor or writing in my food diary to figure out what my next move would be. However, I can say that it was totally worth the time, energy, and effort.

5. Continue seeing a doctor.

CD is associated with malnutrion, infertility, depression, headaches, and other autoimmune disorders. It is important to not only adhere to a strict gluten free diet when diagnosed with celiac but to also stay on top of your health for years to come.

If you any questions regarding my story or being diagnosed in general, please comment below. The community and I are more than happy to help you along in your journey.

Lick The Bowl, It’ Gluten Free!

Tara Rylie

Sources:

https://www.beyondceliac.org/living-with-celiac-disease/newly-diagnosed/

https://www.verywellhealth.com/just-diagnosed-with-celiac-disease-563014

https://www.glutenfreeliving.com/gluten-free/newly-diagnosed/newly-diagnosed/

https://celiac.org/get-involved/personal-stories/

*This last link is not to any scientific or factual data but to actual stories from other celiacs. It is living proof that you are not alone and we are all in this together!

COMMENTS

  • October 17, 2019
    reply

    lee

    thanks for sharing these Indeed relevant and valuable information

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