5 Surprising Ways My Body Changed After My Celiac Diagnosis

Since my celiac diagnosis nine years ago, “gluten free gain weight” or “eating gluten free lose weight” have been two of the most common Google searches. And I get why - I went gluten free for celiac disease, and I noticed big changes in my appearance and body over the years.

So even though I do NOT believe eating gluten free is a healthy idea for people without celiac disease or other medical reasons, I wanted to share how my body has changed since my celiac diagnosis. I am not a doctor and this is purely my personal experience over the span of nine years, but I hope this post will help:

• If you just learned you have celiac disease and you’re feeling alone about some possible celiac symptoms or side effects. (Like noticing a change in your weight!)
• If you’re a gluten free veteran and still struggling with some problematic symptoms.
• If you have fibromyalgia and are wondering if going gluten free could help your pain.
• If you know someone with celiac disease and want to know more about just how much can be impacted by their chronic illness.

So without further ado, here are seven surprising ways my body changed after my celiac diagnosis!

How My Body Changed After my Celiac Diagnosis, Change 1: I discovered more food intolerances.

Before I developed celiac disease around 17 years old, I never had any issues with gluten, dairy, peanuts or other allergens. But lactose intolerance is associated with celiac disease because of the damage typically done to the intestines before a celiac diagnosis. While many people with celiac disease can later eat dairy with no problems once their intestines heal, I’ve personally still noticed bloating, acid reflux and skin breakouts when I eat too much dairy.

And after my bloating, gas and stomach problems (to not get too TMI here!) persisted after going gluten free, I went on a low fodmap diet after talking to my doctor. Many weeks and reintroductions of different high fodmap triggers later, I’ve accepted that some high fodmap foods - like garlic, onion and mango - are no longer my friends.

How My Body Changed After my Celiac Diagnosis, Change 2: I had trouble gaining weight on a gluten free diet.

One of the common myths related to celiac disease is that everyone with celiac disease is thin. While I fit that stereotype, I want to start off by saying not everyone with celiac disease is thin or even underweight pre-diagnosis!

But talking about my personal experience, I lost a good deal of weight before and right after my celiac diagnosis. I even ended up being hospitalized and fed via a feeding tube (read more about that here) because I kept losing weight after I began eating gluten free. And for several years post-diagnosis, no matter how much I ate, the scale stayed at 88 pounds.

It wasn’t until six years after my diagnosis that I finally got back to my pre-celiac healthy weight. So know that if you’re struggling to gain weight and have already exhausted solutions with your doctor, more time may just be needed. And if you ever need to talk to someone who understands how frustrating it can be to hear that you’re “lucky” to be unhealthily thin, my Instagram DMs are always open!

How My Body Changed After my Celiac Diagnosis, Change 3: Some of my fibromyalgia symptoms decreased in severity.

I was diagnosed with fibromyalgia at 11 years old (here is my diagnosis story) and chronic pain is my normal. So one of the biggest blessings I experienced with my celiac diagnosis was that my fibromyalgia pain actually went down!

There is some research connecting a gluten free diet with lower inflammation and pain in people with fibromyalgia. My mom, who also has fibromyalgia, went gluten free with me to see its effect on her too. While we both still have bad days, eating gluten free (and without various other trigger foods we’ve discovered) has helped a lot!   

How My Body Changed After my Celiac Diagnosis, Change 4: My symptoms of being “glutened” shifted in timeline and form.

When I first went gluten free after my celiac diagnosis, I got glutened more often since I was still learning about cross-contamination, safe places to eat out, etc. But I usually wouldn’t feel glutened until a few days after I accidentally ate gluten, and my “glutened symptoms” were typically extreme fatigue, brain fog and a mildly upset stomach.

The longer I’ve been gluten free, though, the more intense my reactions to gluten have gotten. Now when I accidentally ingest gluten or my food comes into contact with gluten, I usually notice it within a few hours. I get extremely bloated, have a lot of stomach pain, acid reflux and often feel fatigued and blurry (thank you, brain fog) for several days.

Everyone’s reaction and sensitivity to gluten are different, and I know some with celiac disease who even have to go to the emergency room after an especially bad exposure. But keep in mind that how you react to gluten right after your celiac diagnosis may change over time!

How My Body Changed After my Celiac Diagnosis, Change 5: My taste buds changed…

Like I’ve shared in the past, my celiac diagnosis is one of the biggest triggers of me becoming a foodie! When gluten was off-limits, that gave me the motivation to try new foods I’d never considered, like dragonfruit, lentils, buckwheat, curry - the list really goes on and on!

But what I think is most interesting is how my taste buds have changed in terms of gluten free food alternatives. When I was first diagnosed and went gluten free, I tried a TON of gluten free substitutes that I found…meh. But years later, I retried some of them - like Schar’s pizza crust and King Arthur’s gluten free cookie mix - and absolutely LOVED them!

I definitely think that one of the benefits of being gluten free for a long time is that you do forget what gluten really tastes like…not to mention, learning what gluten free alternatives are out there that you love. So if you’re new to eating gluten free and are feeling discouraged about the options you’ve tried and disliked so far, know it gets better!

How My Body Changed After my Celiac Diagnosis, Change 6: I kept struggling with stomach problems, to the extent that…

One of the ironic ways that celiac disease has physically changed my body is that I now have mild scarring on my lower stomach from heat packs. When my stomach is upset or I’ve been glutened, heat packs are one of my main sources of relief. And since I have a high pain tolerance from fibromyalgia, I didn’t notice that some heat packs were burning hot.

I included this less as an educational warning (though if you use heat packs, be careful!) and more as an example of the strange ways our invisible illnesses can be made physical. And just like with bloating or stomach problems, these scars can be somewhat embarrassing to talk about with new romantic partners. But they are part of who I am - just like your own symptoms, physical or otherwise, are - and that is never something to be ashamed of!

How My Body Changed After my Celiac Diagnosis, Change 7: I’m more fit and aware of my health than ever before.

I was 18 years old when I felt what it’s like to watch your body waste away and be close to completely giving out on you. As challenging as it was to work my way back up from being 83 lbs and malnourished to the point that a neo-natal nurse had to put in my IV, I’m grateful.

It taught me to be thankful for my body. To be grateful that I can “treat” my celiac disease with a gluten free diet. To not take my health for granted.

So while my body certainly still has its issues and bad days, I’m proud to be active and progressing with my weights at the gym. I’m proud to be aware of my diet and to try to include a mix of nutritious and fun gluten free foods.

And if you take one message away from this blog post, I hope it’s that a celiac diagnosis - or really any medical diagnosis - can be a blessing in disguise. And it could be the key to helping you learn how to feel your healthiest and happiest, one day at a time.

How has celiac disease - or another chronic illness - changed your body? Can you relate to any of my points? I’d love to hear in the comments or DM me on Instagram at collegeceliackc!