3 Things I've Been Afraid to Share About Living with Celiac Disease...

Since I started this blog over eight years ago now, I've talked about a LOT of different topics related to living with celiac disease, from how to be gluten free in college to the best gluten free protein bars to buy. But today, I want to talk about three things I haven't shared about living with celiac disease...honestly, because I'm a bit nervous to talk about them.

In this post, I open up about 3 things related to living with #celiac that I've been afraid to share. #celiacdisease #glutenfree #chronicillness

Before I dive in, I first want to say that the good and not-so-good experiences I'm sharing here are mine and not every person with celiac disease may relate. But if you can relate to some of the challenges I mention below, I hope that this blog post - that me being open and finally talking about these topics - helps you feel a little less alone.

So with all that throat-clearing done...here's three things about living with celiac disease I've been afraid to share.

Things I've Been Afraid To Share About Life with Celiac Disease, 1: Even after being gluten free for eight years, I still struggle with stomach issues.

So often, the gluten free diet is portrayed as the cure-all for celiac disease. And in many ways, that portrayal is accurate considering that a gluten free diet is the only "treatment" for celiac disease so far, and a way to prevent damage to the body from gluten. 

However, I know that many fellow celiacs - including myself - have learned the hard way that eliminating gluten doesn't guarantee perfect digestion and no stomach issues. I've been in official "remission" from celiac disease for around seven years now, but I still have semi-regular struggles with (TMI warning) bloating, gas, constipation and acid reflux. 

In this post, I open up about 3 things related to living with #celiac that I've been afraid to share. #celiacdisease #glutenfree #chronicillness

Now, I don't want to scare anyone newly diagnosed with celiac disease into thinking that they will never feel better. BUT I do want more people to know that they aren't alone if they still struggle with stomach issues after going gluten free for celiac disease...and these ongoing stomach issues are definitely things to talk to your doctor about! 

Personally, I've learned I'm sensitive to high-fodmap foods like onions and garlic. I've also developed new coping techniques like peppermint tea (if you have constipation, drinking Yogi Organic's Purely Peppermint Tea every day has been LIFE-CHANGING for me!), heat packs and gas-relieving yoga poses. And I'm currently starting the process of undergoing food allergy testing to see if there are non-gluten foods also irritating my body.

Things I've Been Afraid To Share About Life with Celiac Disease, 2: Celiac disease impacts my romantic relationship, in good and bad ways.

If you follow me on Instagram (I'm collegeceliackc!), you may know that I've gone from being in a long-distance relationship to a very in-person relationship thanks to quarantining together. And while this has been great in many ways, it has also made me realize how much celiac disease impacts my romantic life.

On the positive side, like I shared in my Insta video here, my chronic illnesses mean that as a partner:
  • I'm extra experienced at communicating (thank you, doctor's visits and restaurant requests)
  • I'm empathetic and have a quirky sense of humor
  • I'm prepared for anything - and always have extra gluten free snacks on hand!
In this post, I open up about 3 things related to living with #celiac that I've been afraid to share. #celiacdisease #glutenfree #chronicillness

But I also have days when I'm flaring up or feeling like a bloated bowling ball, and I don't want to be touched. Or I'm extra grouchy. Or I feel like all I do is complain about my stomach. 

And it can also be hard when your partner loves eating out and trying new foods...and as someone with celiac disease, you feel more anxious than excited when visiting restaurants or ordering takeout.

This isn't to say that my partner isn't super supportive and careful about my health - he is! But sometimes I do wonder how much "easier" dating would be if I didn't have celiac disease or fibromyalgia. And based on how common it is for me to see posts in gluten free Facebook group about partners not understanding or not being supportive, I know other people have seen celiac affect their romantic relationships even more strongly than I have.

And if that's you...my DMs are always open, even if I may not be able to completely understand what you're going through.

Things I've Been Afraid To Share About Life with Celiac Disease, 3: Celiac disease has also helped me find a job I'm super passionate about...

I know the last two things I've shared in this blog post have been a little heavy/on the negative side...but this last piece of news is a good one. I've actually just been afraid to share it because it seems too good to be true, and I don't want to jinx it.

If you've been a long-time reader, you know that I've been blogging and advocating for celiac disease awareness since mid-2013. And that advocacy has led to some amazing blessings, like:
But recently, my passion for delicious gluten free food has also led me to become the Community Manager for Real Good Foods

In this post, I open up about 3 things related to living with #celiac that I've been afraid to share. #celiacdisease #glutenfree #chronicillness

If you haven't heard of them before, Real Good Foods is all about creating delicious grain free and gluten free alternatives to old favorite foods - like pizza, stuffed chicken, burrito bowls and more. 

I worked with Real Good Foods as an "influencer" (put in air quotes because that title always makes me chuckle) for a year or so before hearing about their opening for a Community Manager...and I honestly am SO grateful to spend my work days connecting with amazing fellow foodies on their social media channels. So if you ever have any questions about Real Good Foods and shoot them a DM on Instagram or Facebook, know you're probably chatting with me. 

3 Things About Living with Celiac Disease I've Been Afraid to Share...

Are there days when I wish I had a normal stomach/body and didn't have to think about everything I put in my mouth? Yes. Many more days than I talk about on social media - just ask my boyfriend, the main audience to my complaints. And because I try to avoid adding more negative vibes to the blogosphere, I don't often put these struggles into words. 

But I know that when I'm hurting or going through a flare, it helps to know I'm not alone. So I hope that if you're struggling right now, this post gives you some comfort from knowing:
  • A) You're not alone. And if celiac disease is straining your relationships or still making it hard to feel "normal" and "healthy" each day, you're certainly not struggling on your own.
  • B) As cliche as it sounds, there are silver linings in even chronic illness. And even if it doesn't necessarily lead you to a job or a major life change, I 100% believe our challenges can make us stronger or teach us valuable lessons. 
In this post, I open up about 3 things related to living with #celiac that I've been afraid to share. #celiacdisease #glutenfree #chronicillness

And on that sappy note, I'll stop talking and instead end this post with a question: what is one thing about living with celiac disease you don't hear often enough or want to share? I'd love to hear in the comments - or you can DM me at @collegeceliackc

Comments

  1. I was diagnosed with coeliac three years ago and also have times when I feel so bloated and have all the other issues you mentioned. I'm super careful about what I eat and about cross-contamination, so I also wonder about other food issues. From what I've seen on coeliac groups, lots of us have problems like this.
    Thanks for sharing.

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  2. Congrats on the dream job!! I love when someone is able to find employment that works with their chronic illness and that they are also passionate about!

    ReplyDelete
  3. Well this may be oversharing, but here goes.

    Yikes, FODMAPs plus Celiac is a hard combo, I know. Me too. Luckily I can tolerate FODMAPs as long as I am not even mildly even tiny-ly glutened. Cheese though, hates me. I love cheese, but it hates me. Milk is fine. Yogurt is hit or miss, about 80% miss. Skyr and Desi are both OK. Desi is a brand of Indian-style yogurt made in the US. That one doesn't hurt me, but I have to go to an Indian food store to get it. The thing about FODMAPs is, all gums are fodmaps. All gums. All sorbitol or any such things, are fodmaps. Erythriol, forget it. I can't even look at xanthan gum without bloating. Even for baking at home, I have to get guar gum if I use gum at all. Luckily it's not needed really.

    All whole grains are fodmaps. All beans. Most fruits. You can still get a booklet from Monash university, I think for a nominal fee, with their list. It's really comprehensive. I was very strict about it for just a month and it was exhausting.

    And I can still get gas just from having too much carb. Carb = gas if I can't absorb it all. And my body isn't good at absorbing carb. If you take a lot of Vitamin C, it competes with carbs for absorption too.

    Then there was this one time when I was having alarming symptoms that seemed like appendix. The hospital was very nice about it and the doc gave me dicyclomine. I take that at night, stomach calms, sleep well, wake up, and in two hours everything just leaves normally. Best constipation trick in existence. He had to force me to say I had diarrhea though. I think I had to have that symptom for him to be able to give it to me. Worked wonders though.

    Obviously there's a spastic/uncoordinated gut issue going on for me.

    ReplyDelete
  4. The thing I don't hear often enough about Celiac is that nutrition is the #1 consideration for people with Celiac. I mean, one glutening and we're losing nutrients again for a few weeks. And this process can repeat. I wish more people described the illness as relapsing/remitting. Because if I eat a wheat bread sandwich, I'll show you a relapse.

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