My Celiac Diagnosis Story

My celiac diagnosis story is extremely personal yet powerful - but I think it deserves to be shared.

Please note, the information here should not be taken as medical advice.  I am not a doctor. I am sharing my celiac diagnosis story, which may be different from yours. If you are struggling with celiac disease or stomach issues and need treatment, please speak with a medical professional to get proper care and diagnosis. I hope you feel better soon. Post last updated March 2023.

When I received my celiac diagnosis phone call from the gastroenterologist, I had been expecting bad news. I don’t know what I was expecting to hear, but I had a very strong suspicion it wasn’t good.  

Moments from walking out of my dorm room, my cell phone rang. As a sophomore in college with a double major, I hesitated when the caller ID appeared on my screen. I assumed the conversation with my doctor could take a while, especially given my gut feeling that it was serious.

Remembering all the tests, medicines, lab work, and gut-related issues of the previous few months, I decided that just this once, I could be a few minutes late to class. I picked up the phone and waited to hear what she had to say.

“Hello, Jennifer.  I have the results of the biopsies & blood tests…. you have this thing called celiac disease….  you must eat gluten-free for the rest of your life…..only way your gut will heal… autoimmune... no bread, pasta, cookies, cakes….wheat, barley, rye…”

After a few minutes, I thanked her and hung up, completely stunned.

I had expected something temporary - some type of illness where I’d take medicine for a week and then be back to normal. She had to be joking. No bread, pasta, cookies or cakes...forever? With my phone still in hand, I quickly did a Google Image search for "gluten". 

I regretted it instantly.  

Images of every delicious treat and favorite food of mine appeared. Pizzas covered in cheese and tomato sauce. Decadent chocolate cakes with vanilla icing. Soft pretzels, golden brown and crispy with little flakes of sea salt. As my fingers continued to scroll down the page, I felt an overwhelming sense of dread.

Still not believing an illness where you can't eat cookies, cakes, and pasta could be real, I searched for "celiac disease". When definitions from multiple medical websites popped up, I got nervous. The symptoms seemed to match what I had been going through for the last three months. 

Constant stomachaches. Diarrhea. Weight loss. Acid Reflux. Irregular bowels. Skin rashes.

This could definitely be me.

In this post, I'm sharing my celiac diagnosis story - contributing factors, symptoms, related issues, and how I finally learned to heal.

My Diagnosis With Celiac Disease

Growing Up: Early Signs of Celiac Disease

It shouldn't have been a surprise when I was diagnosed with celiac disease, but it was. I had never heard of celiac disease, or gluten, until that point in time. Looking back now, it all makes a lot of sense.

At the time of my diagnosis, I had been eating whatever I wanted for almost twenty years without question. Inheriting a fast metabolism from my parents, I ate a lot of food without ever gaining weight. And though I could eat whatever I liked, I rarely strayed from a few things.

I was a very picky eater. I loved Wheaties cereal, buttermilk pancakes, chocolate cake, and breaded chicken cutlets. I refused to eat tomato sauce on anything but pizza. I barely touched vegetables except for peas, carrots, and salad. By the time I was seventeen, I had expanded my palette to include tacos, Quizno's subs, and sweet potatoes, but I consistently resisted trying anything new.

Along with this pickiness was a very sensitive stomach. Since I was young, I remember getting stomachaches for random reasons. I could never pinpoint exactly what it was that bothered me. I'd say to myself, "There was too much cheese" or "It was too greasy." I was never treated for anything stomach-related and continued to eat my favorite foods all of the time.

In the fall of my senior year of high school, I was still eating a diet based on wheat products when I developed a red rash on my knees, thighs, and lower back. My skin began to flake and peel off, and it itched like crazy. My parents brought me to a dermatologist to have it tested. After a topical biopsy, I was told it was something called pityriasis rosea. I was given a special cream to apply to the affected area 2-3 times a day. After a few months, the rash eventually faded, but it came back at random times. I applied more cream and thought nothing of it.

All of these things - my diet, my sensitive stomach, and my rash, were all related. I just didn't know it yet.

The Trigger For Celiac Disease

My celiac diagnosis story picks up in the fall of 2008, when a few things happened that I believe "triggered" the onset of this condition.

After months of using hormonal birth control, I suddenly no longer had a period. Completely naive and without any direction or guidance from my gynecologist, I began panicking that something was seriously wrong with me. I was extremely stressed out about what this medication was doing to my body.

I also got the 24-hour stomach bug around Halloween. After spending the last seven years avoiding the stomach virus, I remember throwing up more than usual and feeling absolutely miserable. A few weeks later, I still felt a bit off. My stomach started to hurt randomly with no cause. Then, during the holidays, my "once in a while" stomachaches were becoming frequent. Over Christmas break, as I snacked on an English muffin at my boyfriend Dylan's house (my husband now), my stomach started to hurt. I remember feeling confused why I felt so much pain from something I ate all the time.

And it only got worse.

On January 19th, 2009, our one-year anniversary, Dylan took me out to dinner at an adorable Italian restaurant. With an outdoor patio, live pianist, and lights, it was so romantic and absolutely perfect! We had a lovely dinner and shared a mozzarella sticks appetizer, followed by salads and pasta dishes. Everything was delicious. After dinner, we took a walk on the beach hand in hand, and I was so happy the evening was going so well.

All of a sudden, my gut started cramping so bad I could barely move. Since we were on the beach at night, there were no bathrooms, and I started to get really nervous. But Dylan moved quickly, and said, "Let's get you back to school".

He drove us back to campus, (about a 25-minute drive) while my stomach was in agony. By the time we made it to my dorm, I began vomiting violently in the bathroom toilet. Crying and confused, I asked, "What is happening to me?" while Dylan, ever the saint, held my hair and rubbed my back, just as perplexed as I was.

The Truth Behind My Celiac Disease

After that anniversary dinner in January, my issues continued to skyrocket.

Everything I ingested made me sick. My bathroom habits were beyond irregular and downright awful. People were starting to ask me if I had lost weight (I had - about 5-10 pounds from not being able to digest anything properly). One night, I called my parents in a panic that I couldn't breathe due to such strong acid reflux. I had to stop going to the gym on campus because I was afraid I'd embarrass myself- I had such bad gas it was awful.

By mid-February, I started seeing a gastroenterologist. She put me on antiacids and scheduled bloodwork and an endoscopy, which happened a couple of weeks later. Then, in early March, I got the phone call that changed my life.

But when I hung up the phone, I was in complete denial.

Could I really have this "thing" called celiac disease?

Then I remembered everything about the last three months: the never-ending feeling of sickness - vomiting, diarrhea, stomachaches, GERD, acid reflux, indigestion, weight loss, bloating, paleness, weakness, and exhaustion.

With my heartbeat accelerating, I did another Google search.
"Celiac disease...treatment."

“The only known treatment for celiac disease is to adhere to a gluten-free diet.”

Cursing myself that I shouldn’t have picked up the phone, I turned around and noticed the box of Wheat Thins on the shelf. Knowing those were off the table (literally), I glanced hopefully at the Quaker granola bars sitting on my desk. Grabbing one, I turned the package over to glance at the label. 

“Wheat flour” was one of the first ingredients.  

Feeling tears sting my eyes, I felt an overwhelming wave of dread and disappointment of what my new life would be like. I called Dylan, and then my parents. Knowing how much of a struggle the last few months had been, they assured me not to worry. Now that we had a solution, things would improve and I’d feel better soon. Gluten-free was the answer, and we’d figure out this new diet together.

I dried my tears and did a double-take - the alarm clock on my desk said I was already twenty minutes late for class. Hanging up the phone with my parents, I quickly grabbed my binder and began speed-walking to the liberal arts building. When class was over, I headed back to my dorm room to rest. I had a lot of work to do - and my celiac disease journey was just beginning.

Gluten-Free Isn't Always Healthy

Going gluten-free was supposed to be the end-all. It was supposed to solve my stomach issues, heal my gut, and make me healthy once again. After that phone call, I began eating gluten-free immediately. I gave away all the gluten-containing foods to my roommate. I started buying millet bread at a health food store in town. I began buying gluten-free foods and eating those instead.

But going "gluten-free" isn’t always enough to fix everything.

A gluten-free menu at a restaurant doesn't mean celiac safe.
Oats can be grown with wheat.
Lactose intolerance can accompany celiac disease.

Nobody told me about any of these things. They simply said, "Just don't eat gluten" - which is why my celiac diagnosis story doesn't end here.

Because my diet was so picky, I just replaced all of my bread, pancakes, pasta, and carbs with gluten-free versions, with hardly any fruits, vegetables, or protein.

And because no one taught me about cross-contact or hidden sources of gluten, I got glutened a TON my first few months, which only made things worse every time I dined out.

In addition to celiac disease, I was diagnosed with numerous other health issues, including small intestine bacterial overgrowth, urinary tract infections, leaky gut, irritable bowel syndrome-diarrhea type, lactose intolerance, and eczema. These problems lasted for years. 

I've been to doctors, gastroenterologists, dietitians, naturopaths, and nutritionists. Through the trial and error of all these struggles, I finally understand my diagnosis how my lifestyle choices contributed to my health problems, and how to best nurture my body's needs. I finally know how to dine out safely at a restaurant and how to prepare delicious gluten-free meals that nourish me.

After thirteen years of celiac disease, I've grown to accept the best way for me to be healthy on the gluten-free diet.

Accepting My Celiac Disease Diagnosis

I accept and acknowledge the following about my diagnosis:

I accept that I have celiac disease. I must eat gluten-free and can never cheat on my diet. If I ingest gluten by accident, I will not beat myself up, but practice self-care and work to heal my gut from the exposure.

I accept that while I enjoy milk products, I do better limiting them. I have a degree of lactose intolerance and too much butter or cheese will give me terrible gas pains and I'll be in the bathroom for the next two hours. I was in denial about this for many years, but have finally come to terms with it and actually enjoy creating dairy-free recipes.

I accept that though gluten-free processed foods taste great, they don't make me FEEL great. While it's totally okay to eat these products (and I definitely do!) I know that my body will tell me if I've had too much, and to focus on more veggies & protein when I feel a bit off.

I accept that stress and anxiety play a key role in my eating habits and what foods I put into my body. A toxic work environment had me stress-eating sugar, carbs, and dairy, which led to more problems. Even when I don't think I am nervous or stressed out, my body tells me otherwise. Vegetables, lean protein, some fruits, and minimal grains are what make me feel my best. Getting a good night's sleep, minimizing social media, and doing yoga also helps me feel calm.

I accept that my diet is limited, but my life is not. I am living proof that celiac disease is not the end of my adventures, travels, or fun. I've been to 25 countries with celiac disease! Celiac has only given me more resilience and determination to explore and live an amazing life despite my dietary restrictions. My celiac diagnosis story makes me stronger, not weaker.

Newly Diagnosed? Here are my top tips!

Get support.

Being diagnosed with celiac in 2009 was a lot different than it is today. The increase in knowledge, awareness (not by everyone, but hey, it's better), research studies, products, and information is a huge improvement. But like everything you read on the internet, you have to take it with a grain of salt, and check your facts.

The worldwide web can be a scary place for the newly diagnosed, and there's a lot of fake gluten-free news out there. Everything from Facebook groups claiming celiacs can eat bread in Europe (spoiler alert, you can't) to social media posts designed to fearmonger others, and gluten-free forums that spread lies and misinformation all exist. It's so easy to get overwhelmed and feel like you're being sucked down the internet rabbit hole.

That's why I created my virtual support group: The Confident Celiac Community, a safe space to support you in your journey along with evidence-based resources, chat support, monthly meetings, and guest speakers from the celiac community. You can join us here.

Trust yourself & make sure you're listened to.

If something isn't right, say something. Or go to another doctor/healthcare provider that listens to you!

I went to a gastroenterologist in 2014 for debilitating diarrhea that was happening on almost a daily basis. After a blood test, an endoscopy, and a colonoscopy, he told me I had irritable bowel syndrome (IBS). I was told to take Imodium every day for the rest of my life, and that nothing else could be done.

I was absolutely livid. While I knew I definitely had IBS-D (I still do, but it's manageable and much better now), I knew something else was at play here.

This wasn't celiac disease or IBS. Something ELSE was going on. I refused to accept his sweeping generalization because I firmly believed in my gut feeling that I had another stomach issue.

And you know what? I was right.

Due to multiple urinary tract infections in college (that happened a lot those first few months whenever I got glutened), I had a severe imbalance in my gut. I was diagnosed with SIBO by another (much better!) GI doctor who actually listened to my concerns. SIBO actually came back again in 2017 (it's common to have a recurrence) but that second treatment did the trick. I have had a stable gut and stomach for the last five years.

You are the only person who knows your body better than anyone else. Don't let anyone give you a blanket statement (like IBS) and send you on your way without investigating every possible treatment. You deserve to be listened to and to work together with your medical professional to find your right path to healing!

Practice self-care.

Your body has been through a lot. It's important to honor it, take care of it, and be gentle with yourself - especially in those first few weeks after your diagnosis. By not taking the time to learn better celiac-safe habits when I was first diagnosed, I did more harm to my gut and made things worse. Now, as an adult, I'm much more aware of the right way to dine out at a restaurant, how to travel safely with celiac, and how to speak up for my needs. But it's taken a lot of time to get to this point.

Since celiac disease can be so mentally draining, it's important to build in that self-care time and give yourself a chance to recharge your batteries. Balancing your social life with time to yourself can help give you the right balance to feel included without getting burnt out.

Final Thoughts & My Life Today

Looking back now, I can see the correlation between the many factors that contributed to my celiac disease. My diet growing up, my sensitive stomach, the rash on my legs, and that stressful fall semester of 2008 all contributed to my diagnosis. In fact, it wasn't until recently that my Mom reminded me about the rash - I totally forgot! It appeared 1-2 years before my official celiac diagnosis. Once I went gluten-free, it went away completely. It has never resurfaced.

Now, with fourteen years of this disease behind me, I continue to thrive and live my best gluten-free life. I know what foods to eat and which ones bother me. My weekly meals are full of lots of veggies but I still eat gluten-free oreos and tortilla chips because duh. Everything in moderation!

I know how stress can play a role in my eating habits and how to deal with IBS. I have strategies and resources to eat gluten-free safely at home and around the world. If something doesn't seem right, I have a supportive team of medical professionals (my primary care physician & my gastroenterologist) who can help me get to the root of the issue.

I feel confident that I continue to live an amazing life despite my diet and food restrictions!

I hope that by sharing my celiac diagnosis story with all of you, you can gain some insight from my experience, and know that you aren't alone. If you've made it this far, thank you so much for reading! It wasn't easy to share something so personal, but I think it's important to get more celiac stories out there to help others relate and know they aren't alone.

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Thanks so much for reading my celiac diagnosis story. Here's to our health and healing on the gluten-free diet!

Did you gain any insight from my celiac diagnosis story?

How were you diagnosed with celiac disease?

Let's spread awareness in the comments below!