Just diagnosed with celiac disease? Been diagnosed for awhile now but still struggling? This is for you. Please know that YOU ARE NOT ALONE. We have all been there. The fear, the unknown, the overwhelming effort you feel it is going to take to stay healthy. It can be brutal.
My goal has always been not just to educate and entertain, but to empower; to give those newly diagnosed the strength, confidence and knowledge they need to get busy living. To that end, I asked my celiac community the following question:
What advice would you give to the newly diagnosed? Not necessarily what foods to avoid because anybody can look that up. But what have YOU learned from living with celiac disease that you wish you knew when you were first diagnosed?
Here is some of the spot-on advice they offered:
From day one, your illness will be trivialized. From the doctors who diagnose you, who can make it seem that going gluten-free is the easiest thing in the world, to anyone you speak to who tell you “there are so many gluten-free things on menus now, there’s never been a better time to do it” (like it was a choice), to the waiters that roll their eyes at you. Rise above it.
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It’s a learning curve. Take it slowly and build on your knowledge base. You will make mistakes, and they will be painful. You learn from them though and move forward until it’s second nature.
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Some symptoms will lift immediately. Others will take a while. Be gentle. Know that your body will take a while to recover and that is OK.
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It takes TIME – Nothing comes easy or fast, and you’ll realize that with this diagnosis. Patience is probably the hardest part because you just want to feel better NOW. Take it one step at a time, and know that things will start to become second-nature to you quicker than you thought!
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There will be a breakdown of some or many of your relationships. This illness can be debilitating and socially ostracizing. Either you will tire of the people who tell you how they eat gluten-free for “health reasons” and its SOOOO easy, or they will tire of you, because you are now a “burden” at social engagements.
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You will spend a lot of time apologizing for your illness. Over time you will stop doing this, but particularly in the beginning you will feel like a burden. Sometimes it’s easier not to eat than it is to “cause a fuss.” If anyone makes you feel like this – it’s easier to remove them from your life than it was to remove gluten so feel free to do that.
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Advanced planning is part of your life now (as much as food is). Being spontaneous may be difficult but being healthy and having quality of life is so much better. Take a few minutes to pre-plan and everything else will fall into place.
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Attitude is everything in this journey and there’s no other way to say it. Keep your chin up, don’t apologize for having a disease that is out of your control and find new foods you enjoy that are also healthy for you.
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Know that a lot of the time you will feel like it’s unfair. It is unfair that there are people who can be carefree and just walk into any restaurant and eat and you can’t. But try to remember there are people who have it way worse than you. You can cure your body with just food!
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You’ll learn how to become a good advocate for yourself. It’s hard – it’s not something that comes naturally to many of us! But it’ll get easier, and know that looking out for your health isn’t being unreasonable, overly demanding, or “too needy.”
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Some good stuff, right? Want to read even more advice. HERE YOU GO.
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