4 Tips – Newly Diagnosed with Celiac Disease

So you’ve just been diagnosed with celiac disease…now what?! For some, being “gluten-free” is a choice in their diet to remove excess wheat products and gluten from their foods. For others like me with celiac disease, it really wasn’t a choice. Here are my 4 tips for those that are newly diagnosed with celiac disease.

What is Celiac Disease?

What exactly is “celiac disease”? To define it in a basic medical term, it means that your small intestine is hypersensitive to gluten, leading to difficulty in digesting food. And that is more or less the best case scenario. Some have huge outbreaks in rashes and their stomach feels like it is in knots. Others have to be hospitalized to get their stomach and intestines pumped due to outbreaks that happen internally. It may seem scary, but it really can be easy to control as long as you know what you are dealing with and communicate with your doctor with any and all questions you may have.

May is Celiac Awareness Month!

Diagnosis for Celiac Disease

A celiac disease diagnoses require a blood test and biopsy. To diagnose a person with celiac disease the person should be eating gluten, have a blood test, and an outpatient biopsy of the upper intestine. If the blood test and the biopsy are positive the person has celiac disease.

The intestinal damage caused by celiac disease can heal over time if gluten is eliminated from your life. A person with celiac disease can never reintroduce gluten into his or her diet. There is no cure for celiac disease, so you have to remove gluten from your diet completely.

I was diagnosed with celiac disease in 2017 shortly after getting a diagnosis for Type 1 diabetes. These two autoimmune diseases often go hand in hand.

About 1 in every 100 people have some kind of celiac-related disease – some being simply intolerant to some high-gluten foods while others can’t even have it near their skin. And unfortunately, you can’t grow out of this autoimmune disease.

Newly Diagnosed with Celiac Disease – 4 Tips

You have just been diagnosed with celiac disease and you’re scared. But, coming from my own personal experience, let me help you relieve a little bit of that anxiety and guide you onto a road of a long, healthy life living with celiac disease.

1. Meet with a Nutritionist or Dietitian

First, you are going to need to consult a nutritionist, usually recommended by your doctor. Make sure to ask any and all questions you may have – even if you think they are extreme or obvious. They will tell you of secret places that gluten hides in like shampoo, makeup, and even certain paper plates! It may seem overwhelming, but listen to their advice. Keep notes and keep in communication with them so that you can have access in learning more about what to keep out of your body to keep it healthy.

At your meeting take good notes or record it to take notes after. Usually they will give you some information to take away with you, too. Keep that handy for future reference. You are being bombarded with a lot of information at once.

2. Learn about Celiac Disease

Next, start researching. It may seem boring and you might just find yourself on WebMD for hours, falling asleep. But, if you love blogging and social media, start following people who have blogs and accounts that are designed around having celiac disease. Following gluten-free people is smart, too, however – it poses a risk if they don’t have the disease which leaves them with some wiggle room to not be fully gluten-free like you need to be. Look up celiac.com and start being active on the forums on there. It is a very uplifting community and is filled with information to help you get on track to find your new normal. BeyondCeliac.org is also another great online resource for information.

Check out 25 Things Celiacs Should Do When Accidentally Glutened for some great tips for accidental gluten exposure.

You might like this recipe for Gluten Free Cauliflower Carbonara, A Survival Guide for Travelling as a Celiac, What I Have Learned to Love About Celiac Disease or this Split Pea Lentil Soup.

3. Let Friends and Family Know

Although this next step may seem uneasy and maybe a little difficult to explain, let your family and friends know. This will help them understand that you may not be able to participate in all the things you used to indulge in, but with good reason. If you live with people, this educates them on what their next steps are in helping you create a healthy home environment and de-gluten everything. This will also make parties easier to plan, food-wise – so that you are still able to be involved and have a great time.

4. Get Rid of Gluten Foods

Your next step may seem obvious but I’ll list it anyways – clean out those cabinets and shop for all new foods! It will be clearly listed on most food containers that it contains gluten, but if you are unsure of the labels, you can always look it up or contact your nutritionist.

Shopping at natural foods or health stores will usually help you distinguish the gluten-free foods with their own special sections of their products. And it is pretty safe to say that they know what they are doing there so trusting that those are gluten-free foods will be obvious with their separate section and being in big letters on the front of boxes. Stock up and keep in mind that there might be times when you will have to bring your own food somewhere so keep some extra gluten-free snacks or pre-made meals handy.

I know any kind of diagnosis sounds scary at the time and honestly, it is totally valid. Especially if you have no idea what it even means! I mean, I felt completely overwhelmed when I first heard the news. But guess what? Life is still SO good! It was an adjustment, but hey! That’s life – always throwing you surprises!

All of my gluten free recipes can be found HERE. Enjoy!

I hope this blog helped you see the easy ways you can adjust in this new lifestyle change with celiac disease and make you a little less freaked about what is ahead for you. And hey, you always have me if you ever need friendly advice. 🙂

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