Recently Diagnosed With Celiac? Read This!

Recently diagnosed with celiac disease? Deep breathes! From how to buy gluten-free food to how to avoid cross-contact, I know learning to manage celiac disease can be overwhelming.

So rest assured: you are going to be okay. You are going to figure this out. And you are totally valid in feeling overwhelmed.

Now I’m going to guess that if your situation is anything like mine when I was diagnosed 10 years ago, that your doctor just told you to “go gluten-free” and that was it. Maybe you even got a handout or 1 quick session with a dietitian…

And none of it prepared you for the confusion and overwhelm that is learning to stay celiac-safe at home, when grocery shopping, dining out, at parties, and beyond…

First, I want to say, I am so sorry you weren’t given more. Second, keep reading for what to do next in order to start living celiac-safely today.

Table of Contents

What to Do After a Recent Celiac Diagnosis - Recently Diagnosed With Celiac Here's What to Do! - Tayler Silfverduk - Celiac Dietitian

What a New Celiac Diagnosis Means

So you’re recently diagnosed with celiac disease, let’s start with the basics. What does a celiac diagnosis mean?

First, know that you did not cause your celiac disease. While we aren’t entirely sure what causes celiac, we do know that you must have the gene (meaning a lot of it has to do with genetics) and the gene must be triggered by somewhat random events.

That said, celiac disease is an autoimmune disease where the body overreacts a protein called gluten, treating it as a foreign invader. Basically, when you eat gluten, your immune system launches an attack to try to protect you, which can result in over 300 symptoms and damage o the small intestine.

The good news? All you have to do to prevent this from happening is avoid gluten, which is found in barley, rye, and wheat.

The bad news? It’s not as simple as it sounds. People with celiac need to make sure not only does their food not have any gluten but also that it hasn’t come into contact with gluten. This is where celiac safety often becomes overwhelming because we live in a globally gluten centered food system and many cultures are centered around gluten as well.

Essentially, a celiac diagnosis means adapting your entire life to be gluten-free. There is a lot of problem solving, grief and other complex emotions that come with this.

Symptoms May Take a While to Go Away After a Celiac Diagnosis

If you are newly diagnosed with celiac disease and struggling with symptoms, you might be wondering “how long will it take for them to go away” after going gluten-free. I wish I had a defined answer for you, but relief varies per person.

Things that factor into how quickly you find relief after a celiac diagnosis include:

  • If you experience gluten withdrawal
  • How long you went undiagnosed
  • How damaged your small intestine was
  • How elevated your celiac labs were
  • How well you adapt to a gluten-free lifestyle and avoid gluten
  • How quickly you identify and address other co-occurring conditions like IBS
  • How quickly you identify and address co-occurring intolerance like lactose intolerance with celiac.

For some people it takes them a few days to a few weeks to feel better, for others it can take them a few months to years to fully feel normal. If you are concerned with how long it is taking for you to feel better, meet with a celiac disease expert to discuss underlying causes. Speaking of meeting with a celiac disease expert…

What to Do After a Recent Celiac Diagnosis - Recently Diagnosed With Celiac Here's What to Do! - Tayler Silfverduk - Celiac Dietitian

What to Do When You're Recently Diagnosed with Celiac

When it comes to being recently diagnosed with celiac disease, it’s important to take the proper steps to ensure success with gluten-free living.  from finding a team of celiac experts to support you, to figuring out what gluten-free living will look like for you, below are the steps I suggest everyone take when newly diagnosed with celiac.

Step 1: Learn to Identify Gluten on a Food Label

 rThe most important skill when recently diagnosed with celiac disease is being able to identify gluten on a food label. If you’re not able to accurately check food for gluten on a food label then you won’t be able to avoid gluten properly and potentially delay or prevent healing.

I teach label-reading in the USA using 4 simple steps: look for certification and claims, look at the allergen statement, look for unsafe ingredients, and look for suspicious ingredients. I teach people to read food labels in that order because it tends to cut out the most confusion.

There’s a lot more nuance to it so for more on label-reading, check out my Celiac Crash Course where I cover it in-depth, complete with practice problems and video simulations to help you build confidence.

Step 2: Avoid Cross-Contact as a Recently Diagnosed Celiac

These second most important skill after a celiac diagnosis is your ability to avoid cross-contact. Thus, educating yourself with cross-contact with celiac disease is the second thing I’d focus on.

If you’re not familiar, cross-contact with celiac disease is when a gluten-free food comes into contact with gluten, making the gluten-free food no longer safe for celiac disease.

This can happen by using certain kitchen appliances, not properly cleaning kitchenware, or simply touching gluten and then touching gluten-free foods with out washing your hands or changing gloves.

Cross-contact can sound super scary and often people with celiac get overwhelmed and confused about what they actually need to do to avoid it. If this sounds like you, I cover ALL of the basics in the Celiac Crash Course. If you’re recently diagnosed with celiac and didn’t get any guidance on how to stay celiac-safe, this is the course for you.

Step 3: Set Up Your Home After a New Celiac Diagnosis

As a recently diagnosed celiac, once you’ve got a solid understanding how to read a food label and avoid cross-contact, it’s time to set up your home. How you set up your home will vary depending on your circumstances.

You can set up a celiac-safe shared home. This is where both gluten and gluten-free food will be allowed and will require cross-contact precautions to be set in place to keep you safe. It tends to be most effective for those with large families where an entirely gluten-free household is very cost-prohibitive.

You can also set up a dedicated gluten-free home, this is where the whole home is gluten-free. Generally, gluten is not allowed in the home and the home serves as a safe haven from a gluten centered food system and culture.

There are pros and cons to both options and only you know what the best and most feasible option is for you. If you need help with figuring out how to set up your kitchen after you make the decision, again I cover this in detail in the Celiac Crash Course.

Step 4: Learn to Speak Up When Recently Diagnosed With Celiac

The next important step to take when recently diagnosed with celiac disease is to get confident in speaking up for your new needs. Speaking up can feel uncomfortable and it’s important nonetheless.

If you’re a woman recently diagnosed with celiac disease, speaking up can feel like you’re going against everything you’ve been socialized to do. As often, women are socialized to be accommodating (not accommodated), to be soft-spoken, and not to make a “big deal” of things.

In a society that ask women to take up the least amount of space socially, emotionally, and physically, learning to speak up can feel uncomfortable and yet is the most important skill you can build with celiac.

Regardless of if you’re a woman or man with celiac, there are other obstacles to speaking up and educating others too.

From people doubting your needs after knowing you to eat gluten for years, to family refusing to be screened for celiac, there’s a lot to tackle when it comes to educating others on celiac.

Again, if you need help, I give you tons of tools and strategies to assist in this in the Celiac Crash Course! Complete with handouts to guide conversations with friends and family.

Step 5: Learn How to Eat Outside the Home

Another important skill to build when you’re newly diagnosed with celiac disease is the ability to eat safely outside the home. When I say safely eat outside the home I mean dining out, going to dinner parties, attending conferences etc.

There are a lot of skills to learn here but some of my best tips are:

  • Regardless of the food event always have a decent sized snack before going to prevent getting “[h]angry” and making unsafe decisions.
  • Be sure to do research before the event. This could include contacting caterers, contacting the host, or calling the restaurant and verifying if safe food will be provided.
  • If a safe meal will not be provided, ask them if it will be okay if you bring your own food. (If it will be at an event like a concert, bringing in your own food is an ADA reasonable accommodation, though you may need a doctors not for this).
  • If you’ve confirmed there will be safe food, always bring a snack with you to the event in case something changes. And always be sure to advocate for cross-contact precautions and double check at the event that the food is safe.

There are a lot of other things to consider depending on the event, I do cover this in detail too in the Celiac Crash Course. Including simulations for how to order safe gluten-free food at restaurants.

Step 6: Avoid Burnout With Recently Diagnosed Celiac

Being recently diagnosed with celiac disease can cause a lot of overwhelm. We are only 6 steps into starting to manage celiac disease and already a lot of complexities have arisen. That’s why it’s important that as you’re learning to navigate your new celiac diagnosis, that you’re working to prevent celiac burnout.

Now there are so many things that play into celiac burnout but I think there are 2 big factors.

The first big player in celiac burnout is not having a strong foundation in celiac safety. This is because you’re constantly trying to learn as you go which adds extra burden and stress to everything you do and can add more confusion if you’re not getting the right info.

The second big factor in celiac burnout is not giving yourself time to reflect and recover from stressful food situations. This could look like dining out too many times in a week without time to learn from the situation or even just regroup.

Making sure you have a plan to prevent burnout after a celiac diagnosis is essential to making sure you’re staying on top of your celiac health.

Step 7: Have a Gluten Exposure Plan

The next step to take after a recent celiac diagnosis is to build a gluten exposure plan. This obviously only applies to those with symptomatic celiac but it’s essentially a plan you have in place to make sure you have everything you need to deal with gluten exposure.

The key to this is knowing what symptoms you struggle with after gluten exposure and having things to help soothe those symptoms. If you need help with this, I give you some options in this gluten exposure kit blog post, but I also cover it in-depth in the Celiac Crash Course.

Tayler Taking Pictures of Horses in Iceland - Traveling with Celiac Disease
Me taking photos of horses during my travels to Iceland with Celiac

Step 8: Learn How to Travel With a Celiac Diagnosis

This technically falls under eating outside the home, but traveling after a recent celiac diagnosis is a huge ordeal and thus, I’ve given it it’s entirely own category. Learning to travel with a new celiac diagnosis is essential for many.

From how to survive road trips to how to fly to other countries and stay safe, learning how to travel with celiac is an important skill when you’re ready to tackle it.

I also cover this in the Celiac Crash Course, including what foods can be packed on a carry-on, what ADA protections you have, how to get gluten-free meals on airplanes and more…

You might also find it helpful to follow different gluten-free travel bloggers for tips and travel guides to make your trips easier. Jen from the Nomadic Fitzpatricks and Wheatless Wanderlust are two of my favorites. And if you’re traveling to Iceland, check out my guide to eating Gluten-free in Iceland.

Step 9: Balance a Gluten-Free Diet for Healing

Once the basics of celiac safety feel routine after a recent celiac diagnosis, then we can start to look at how balance a gluten-free diet for health and healing. Including how to modify family favorite recipes to be celiac safe.

I make this one of the last things to address on the list because balancing a gluten-free diet won’t matter if you’re not able to avoid gluten exposure. If you’re unable to avoid gluten and cross-contact in the variety of scenarios above, adding on how to balance a gluten-free diet is likely too much.

And to be completely honest, if you’re not avoiding gluten and cross-contact properly, it doesn’t matter what you’re eating if you continuing to damage your small intestine. But once you’ve mastered those safety skills, we can start to talk about eating to heal.

There’s a lot to consider when it comes to balancing a gluten-free diet for health and healing, including getting enough iron and fiber on a gluten-free diet. The best way to do this is to look at your current food preferences and see what you can enjoyably add more nutrition.

Again, if you need help with this, I give you simple strategies to addressing nutrient gaps in a gluten-free diet while still making space for the foods you enjoy in the Celiac Crash Course.

Step 10: Follow-Up Testing for Recently Diagnosed Celiacs

Last but not least, when you’re recently diagnosed with celiac disease, you want to make sure you’re getting the proper follow-up testing done. This will involve making sure you have a celiac specialist on your team who is aware of how you were diagnosed and how to follow-up appropriately to make sure your body is responding to your gluten-free precautions.

Often these tests include a bone density scan to assess for if celiac has impacted your bone health, a celiac panel, and depending on how long it’s been, a follow-up endoscopy/biopsy. If you need help with this, I break down all of the tests, from what they do, when to get them, and what to look for in them in the Celiac Crash Course.

Once you’ve gotten the follow-up testing, it’s then essential to make the proper adjustments to your diet and celiac safety plan with your provider. If you’re looking for a provider specializing in celiac, here’s a really great website to help you locate one near you. I also do see people virtually.

Being Recently Diagnosed With Celiac Disease Can Be Scary...

Being recently diagnosed with celiac disease can be scary and overwhelming. From figuring out how to buy safe food, avoiding cross-contact, convincing others of your needs, to balancing a diet to address nutrient deficiencies and gaps – If you need help, don’t be afraid to get it.

Again, if you need it, I cover all of the basics of celiac safety in the Celiac Crash Course which also comes with 2 months of my virtual Celiac Support Group to help you adapt to a gluten-free lifestyle as seamlessly as possible. Check out the course with this link!

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