5 Common Mistakes to Avoid When First Going Gluten Free
When you get a celiac diagnosis and need to go gluten free, changing your entire diet can feel overwhelming - especially if your health is suffering due to celiac disease symptoms. And I know from personal experience how easy it is to make mistakes when you first go gluten free.
So to help any of celiac newbies or new gluten free eaters, I’m sharing five common mistakes I often hear about when people go gluten free. *As always, remember that I am NOT a medical professional and you should ALWAYS reach out to your doctors if you have any concerns about your health, celiac diagnosis or dietary needs.* But based on my personal experience and the stories I’ve heard from hundreds of others with celiac, here are five mistakes you should try to avoid while going gluten free.
Going Gluten Free, Mistake #1: Expecting to feel better right away.
Especially if you are going gluten free due to a celiac diagnosis, you unfortunately shouldn’t expect to feel better right away. As I’ve shared before, it took me many months - even years - to start feeling mostly normal on a gluten free diet. And I'm not alone. The University of Chicago found that intestinal healing can take up to two years, particularly in those diagnosed later in life. Meanwhile, a 2009 study concluded that it is "exceptionally rare" for celiac adults to exhibit "normal" intestines, even after following a strict gluten-free diet for 16 months. Adolescents with celiac like myself aren't immune to these issues, either. One 2008 analysis of 45 children treated for celiac disease discovered an increased presence of T cells, one sign of inflammation.
I don’t share my story or these stats to scare you or make you think you’ll be crummy for the rest of your gluten free life. Overall, I’m able to live my (gluten free) life to the fullest nowadays and am pretty dang healthy. But if you’re feeling the same or worse after going gluten free...you’re not alone. And there is light at the end of the tunnel.
And if you are still feeling worse after eating gluten free for a few weeks or months, that is definitely a sign to NOT make mistake #4...
Going Gluten Free, Mistake #2: Forgetting about non-obvious sources of gluten.
When I first learned I needed to go gluten free, I thought it’d be relatively easy - just cut out bread. But the truth is, gluten exists in a lot of different products...some of which aren’t even food. That’s why it’s important to take the time to read ingredient labels on everything you eat or use, as annoying as it is.
Even eight years after my celiac diagnosis, I’m still sometimes surprised by the sneaky places that gluten can hide, like:
And also keep in mind that if you have celiac disease, you need to avoid anything that has come in contact with gluten too. So using scratched or wooden pots, pans or utensils that could have gluten particles in the cracks should be avoided. (Read more about what kitchen tools you should replace after a celiac diagnosis here). Some celiacs prefer having their own set of gluten free kitchen tools, while others are comfortable sharing as long as everything is washed thoroughly. Similarly, some with celiac don’t worry about gluten in shampoo or lotion, while others have symptoms if they use one containing gluten. So figure out what you’re comfortable with and go from there!
Going Gluten Free, Mistake #3: Focusing on too “clean” of food to heal.
Many in the gluten free and celiac community advocate for people just going gluten free to stick to naturally gluten free foods, and this does have its benefits. Early on, my body was malnourished and vitamin deficient from celiac complications, and I needed all the nutrients from fruits, vegetables and other whole foods that I could get. It’s also important to realize that many processed gluten free foods are higher in sugar and fat than their gluten-filled counterparts, so a “gluten free” product is not necessarily a healthy one.
However, my own journey going gluten free also taught me to not be too strict with my diet. For a time, I became so obsessed with healing that I wouldn’t eat any processed foods...which made it hard for me to get in as many calories as my healing body actually needed. It also created a negative relationship with food that took years to improve.
So instead of worrying about eating a “clean” gluten free diet, I’d focus on eating a SUSTAINABLE one. Work with your doctor - and, ideally also, a nutritionist - to find a balance of gluten free foods that works for you. And keep in mind that there are countless ways to eat gluten free, too!
Going Gluten Free, Mistake #4: Not having a follow-up appointment with your doctor.
Especially if you have celiac disease and recently got diagnosed, having a follow-up appointment with your doctor is vital. Use it to discuss how you’re doing eating gluten free, whether your symptoms have reduced since your dietary change, if you need a referral to a gastroenterologist for further testing or a nutritionist for help meeting all your dietary needs, etc.
According to Dr. Peter HR Green, Director of the Celiac Disease Center at Columbia University, you should get a blood test to check for nutritional deficiencies (particularly ferritin, vitamin B12 and vitamin D) every year. That blood test should also double-check that your celiac disease antibodies are within a normal level and not indicating continual inflammation or intestinal damage. A follow-up biopsy may also be helpful to check for any remaining damage, especially if you were diagnosed with celiac disease as a child and moving to an adult doctor. The goal of both of these tests is to ensure that your gluten free diet is going well and doing everything it’s supposed to.
Going Gluten Free, Mistake #5: Not showing yourself enough grace or TLC.
When your diet plays a big role in your overall health, it can be easy to beat yourself up when you get glutened and feel like a bag o’ poo. But here’s the thing:
Eight years after going gluten free...I still make mistakes (or get put into situations where I’m glutened outside of my control). And you will too. And that’s OK.
Because we’re only human, and all we can do is our best. So be cautious and do what you need to do to safely eat gluten free. But also recognize that if you do get glutened, feeling guilty or angry at yourself won’t help you recover any more quickly.
Similarly, you need to expect to experience a wide array of feelings about needing to go gluten free, including denial, grief, anxiety - you name it, it'll probably happen. So if you find yourself crying over not being able to eat your old favorite bread, don't feel like you're over-reacting. You will have to grieve your old diet before you can accept your new one...and showing yourself extra grace during this transitionary time will make it a little easier.
5 Common Mistakes To Avoid When First Going Gluten Free
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