This Celiac Disease diagnosis story walks you through the symptoms and realizations leading to my diagnosis. I also include frequently asked questions to help you better understand the nature of Celiac Disease.
Whether you are a diagnosed Celiac, suspected Celiac, or friend of a Celiac, you are welcome here.
My Celiac Disease Diagnosis story ends with diagnosis as an adult, although there were signs and symptoms as early as I can remember.
What triggers celiac disease?
The onset of Celiac disease can be triggered by stressful life events, pregnancy, or a medical procedure. In many people, the genes are already active as children, and no trigger is needed for onset. Most people with celiac disease only experience symptoms while eating a diet with gluten. Symptoms generally resolve on a gluten free diet.
My Celiac Disease Trigger
While it’s hard to pinpoint exactly when it all started, I was definitely an odd eater as a kid. I chose raw vegetables over pretzels, ate only a few bites of baked goods, and disliked bread and crackers.
For this reason, I suspect my Celiac Disease was active as a child, and no trigger was needed.
My favorite foods were peanut butter on celery, nuts, lunch meat rolls, and cheese.
My mom would send me to school with bologna sandwiches; I would actually pick out the bologna and arrive home with two uneaten slices of bread each day.
What does a Celiac attack feel like?
Since Celiac Disease has over 300 known symptoms, a Celiac attack can vary person to person. Common symptoms include digestive issues like nausea, diarrhea, constipation, or abdominal pain. Headaches and migraines, brain fog, neuropathies, joint pain, and skin rashes are also common.
My first Celiac Attack
At some point in Middle School, I remember feeling self conscious about my weird eating habits. I made an effort to eat the bread, have the slice of birthday cake, and share peanut butter crackers with friends.
This is when I first experienced a "celiac attack". While many of the symptoms are vague in my memory, I distinctly remember the first time I had acute abdominal pain.
Have you ever swallowed a tortilla chip wrong and felt the sharp edges drag down your throat all the way to your stomach? It's very similar to what I experienced in my intestines. It felt like I ate glass shards and it lasted for hours.
My Celiac Symptoms worsened through High School
In High School, I was a four season competitive athlete. That means pasta dinner parties, hotdogs at concession stands, and bagels from Panera with friends after practice.
I was under a lot of school and family stress at the time, and bloating and digestive symptoms worsened. At one point, I was taking anti-diarrhea medications with breakfast everyday, though they barely worked.
This was when I became concerned and started talking to doctors. They decided it was stress and maybe a touch of Irritable Bowel Syndrome.
I collapsed at work
It wasn't until I collapsed at work that my symptoms were taken seriously. I was on my way back from a quick break at the cafe when I doubled over in pain.
I couldn't stand up, I could barely breathe. With a little help and time, the pain calmed enough for me to drive to the doctor. The medical staff determined that I had a stomach ulcer. I also tested positive for lactose intolerance.
Lactose intolerance can be a symptom of Celiac Disease. When the intestines are damaged, they can fail to produce the enzyme that breaks down lactose. Most lactose intolerance caused by Celiac Disease subsides after healing occurs on a gluten free diet.
Dairy free helps some, but symptoms linger
While eating dairy-free alleviated some symptoms, I continued to experience pain and bloating. At this point, I thought bloating was normal since I was bloated all the time.
Throughout college, I experimented with avoiding certain foods to help with bloating. Sometimes I avoided beans, raw vegetables, soy, sugar, eggs...
While doctors didn't have answers, I found a way to manage my health with lots of rest and easy exercise.
How long can Celiac Disease go undiagnosed?
Some people are never diagnosed with Celiac Disease. Researchers estimate that only about 1 in 5 people with Celiac Disease ever receive an official diagnosis. For those who are diagnosed, the average time to diagnosis can vary. Research suggests that many diagnoses take between 6 and 10 years after onset of symptoms. This is because Celiac symptoms can vary person to person.
Source: Celiac.org fact page
My Celiac Disease Diagnosis Story
I was finally diagnosed with Celiac disease after a combination of luck and brute force on my part.
When I moved into an apartment with my partner in my early 20's, my health took a turn for the worse.
Typically, I ate rice based dishes and fresh salads by choice. My boyfriend, an avid cook excited to show off his skills, made malt-o-meal (wheat porridge), sandwiches, and pasta like they were going out of style.
After a special pasta dinner, I grew violently ill and was left unable to eat solid food or go to work for three weeks.
When I could finally eat solid food again, it was primarily dry toast, wheat porridge, and bananas. I fell violently ill again.
The Never-ending doctor visits
I made frequent trips to medical specialists, all with no answers. All blood work, allergy tests, and other exams were inconclusive.
At one point, a doctor suggested my low vitamin levels were due to anorexia nervosa. After that, I brought my boyfriend with me to appointments to explain that I was eating, and the symptoms were real (not in my head).
I was finally diagnosed after demanding a Celiac Disease blood test, having done my own research online.
My blood test was inconclusive, with some values outside the norm while others appeared normal.
How is Celiac Disease Diagnosed?
Celiac disease is diagnosed through a blood test and endoscopy of the stomach and upper intestine. During the endoscopy, samples are taken from the lining of the intestine. These samples are then inspected under a microscope for signs of Celiac Disease. Usually, a blood test alone is not enough to full diagnose and a positive intestinal biopsy is considered the best and most reliable form of testing.
The biopsies from my endoscopy were positive for Celiac Disease. I was told to eat gluten-free and come back if symptoms did not resolve.
Can Celiac Disease ever go away?
There is no cure for Celiac Disease. Once you are diagnosed, you can manage symptoms and reverse damage to your intestines by adopting a life-long gluten-free diet.
After you remove all sources of gluten from you diet, research shows recovery can take anywhere between a few months for children to several years for adults. Eating gluten can cause further damage to your intestines and delay healing. This is why it is important to stay consistent when eating gluten-free.
Learning to live with Celiac Disease
Learning to live with Celiac Disease is a hurtle in itself. Gluten can be found in so many unexpected places.
Sources of hidden gluten include soy sauce, salad dressings, beef broth, cereal, baked goods, potato chips, seitan, and more. It's important to read ingredients labels carefully and learn to recognize names for gluten-containing ingredients.
For me, simply eating gluten-free was not enough to relieve symptoms. I experimented with low FODMAP, paleo, and nightshade-free diets.
An Autoimmune Paleo diet helped me the most early on. I recommend the Autoimmune Paleo Cookbook to anyone still struggling with symptoms after going gluten-free.
Eventually, after about 3 years on a grain-free and nutrient-dense diet, I was able to expand to more foods while still feeling well after eating.
It wasn’t until 4 or 5 years on a gluten-free diet that I finally felt good after eating rice and most gluten-free products.
Celiac Disease Resources:
- Celiac Disease Symptoms & how to get a diagnosis
- How to go Gluten Free -- 10 BEST tips for Beginners
- How Celiac Advocates are changing Medical Care + How to talk to your Doctor
- 10 things I wish my Friends knew about Celiac Disease
- How to prevent cross contamination -- 5 Gluten Free Kitchen Rules
The Best Ebook: The Essential Gluten Free Living Ebook
More Celiac Stories
- Why I Quit my Job after a Celiac Diagnosis
- Important Reminders for Celiacs after a Near Disaster
- Long-Term Travel with Celiac: How the gluten-free diet influenced my plans
I hope this Celiac Disease Diagnosis Story gives you a trail of breadcrumbs to your own recovery. While the path to diagnosis was challenging, I feel better now, after going gluten-free, than I ever have in my life.
Wishing you good health,
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