Celiac Diagnosis

A Diagnosis….and the End of Bread?


I’ve always considered myself to be pretty healthy.  I’ve never broken a bone, never had a long-term illness, never had to stay in the hospital aside from birthing my babies.  I worked out, counted my calories, and have never been a huge drinker. 

But those babes…they kind of did a number to my stomach.  Between carrying Easton really low, and Beckett being enormous, my ab muscles were so pulled apart, I basically had my own little Grand Canyon right down my abdomen (read more about Diastasis Recti here).  So after I complained for the millionth time that my stomach was tender, and my tummy pooch would never ever go away, my husband convinced me to get it checked out.

After many pokes and prods, my doctor pronounced me physically fine and blamed the diastasis recti for the tenderness, pending bloodwork.  Little did I know that she would call me a few days later with a diagnosis.

“The bloodwork came back, and you have Celiac Disease,” she said.

“I have what?”

“You have Celiac Disease.  Not just Celiac Disease, but off-the-charts Celiac Disease.”

My doctor explained that Celiac disease is a genetic autoimmune disorder in which ingestion of gluten (the protein found in wheat, rye, and barley) damages the small intestine.  When gluten is consumed, an immune response begins in the body and it attacks the small intestine.  Over time, these attacks wear down the villi, little fingerlike things that line the small intestine and absorb nutrients.  Celiac disease is hereditary and affects about 1 in 100 people worldwide.

I was heartbroken, yet thankful.  I may never have bread again.  Who can live without bread?  Is that even possible?  And cakes and cookies?  And Taco Bell Crunchwraps?  This can’t be happening.

But at the same time, I was so thankful that I had an answer, and that my diagnosis wasn’t immediately life-threatening.

And so the journey began.  The next step was to see a Gastroenterologist, who would perform an Endoscopy, the gold standard for Celiac Disease diagnosis.  I was instructed to not change my eating habits quite yet, as I needed to continue consuming gluten until the procedure.  So instead, I did what any goal-oriented girl would do and focused on my Gluten Bucket List. 

A bucket list, you say?  Oh yes, that’s a real thing.  Mine included the above-mentioned Taco Bell Crunchwrap, pizza, Runzas (a Nebraska thing!), Chinese food, onion rings, cinnamon rolls, donuts, lots of pasta, Kolaches, and bread – lots and lots of bread.

After the Endoscopy, the Gastroenterologist confirmed that my intestines were indeed scalloped (something that only happens if you have celiac), and my villi were all but obliterated.  And so the line in the sand was drawn – it was time to officially go gluten free.  My bucket list experience was amazing, but I felt worse than ever and was ready to start feeling better.

The Bumpy Road to Healing

Immediately after going gluten free, I felt much better.  I felt lighter and thinner than I had ever felt!  It was amazing.  Flat belly for life, here I come!  Well, or so I thought.  About two weeks in, I began feeling terrible.  Like, really really terrible.  I had headaches, the shakes, heart palpitations, and my skin was on fire. I called my doctor, and the nurse casually mentioned a detox period.  Oh, and it can last 8-10 weeks. 

Those 8 weeks were extremely challenging.  Not only was I overwhelmed with simply adjusting my diet, but feeling like I had the flu with burning skin was horrible.  Add a very busy career and a new position at work to the plate, and still showing up for my family, and I was at the end of my rope.  But I made it through!  Back to feeling better…..for awhile.

About 6 months after I went gluten-free, I realized I was feeling worse again.  Worse than I was before I stopped eating gluten.  I started thinking through what I was eating and realized that in many cases, I had just swapped out my regular processed foods for the gluten-free version.  Except that the gluten-free versions aren’t fortified, so I wasn’t getting anywhere near the same nutrition, and they also have all sorts of funky ingredients and a LOT of sugar to make them taste somewhat edible.

Time to scale back on store-bought goods and focus on real, whole foods.  I spent a lot of time in the kitchen, with hours and hours of trial-and-error and trying out Pinterest recipes to learn how to cook and bake with gluten-free ingredients.  I learned to batch cook and fill my freezer with trays of food so that I always had something easy to grab on the go.  My husband was a dutiful taste-tester, and still today my measure of success is whether he thinks it holds up to a gluten-filled product. 

More Food Sensitivities

With the change to whole foods made, I felt I was closer to feeling good but knew I wasn’t quite there.  I still experienced tremendous bloating and terrible headaches on the daily.  Since I had eliminated most chemicals from my diet, I began to wonder if a specific food was to blame.  Enter a nutritionist with a food sensitivity test.  Aha, now we’re getting somewhere!

My number one sensitivity: whey (the protein found in dairy). 

Number two: coffee.

Are you freaking kidding me?  Dairy AND coffee?  Back to the pity party.  Life without gluten, dairy, and coffee surely would be a dismal one. 

At the advice of the nutritionist, I began an elimination diet based on my sensitivities and soon learned that removing dairy and coffee made me feel much better – brain fog be gone!  Headaches, poof! 

But the bloating?  Still there.  I would wake up with a flat tummy and by lunch, I felt 6 months pregnant.  By bedtime, I was ready to explode.  I knew that food sensitivity tests, while very helpful for me, don’t tell the full story.  So, back to the gastroenterologist I went, hoping for some additional wisdom.

Well, some wisdom, and two new diagnosis: fructose malabsorption and SIBO (Small Intestine Bacterial Overgrowth).  Turns out both are very common ailments among those with Celiac. 

Fructose malabsorption is a condition in which my intestines aren’t able to break down specific types of simple sugars, most commonly found in fruits and vegetables.  Right, ok….so garlic, onion, avocados, and a whole host of other things needed to go.  That made cooking very enjoyable and my husband was excited to take on the challenge….NOT. 

SIBO is a condition in which the bacteria in your intestine are out of balance.  Could be the good bacteria or bad, either can cause it.  But when the bacteria festers, many different bowel-related side effects could occur. For me, it was the bloating.

The Low FODMAP Diet

The good thing about the fructose malabsorption and SIBO is that the diet for the two is generally the same.  The Low FODMAP diet is advised, which limits certain types of carbohydrates that the intestines have a hard time breaking down.  But typically, overcoming SIBO requires more than just a diet.  A gastroenterologist will prescribe a specific antibiotic, but it’s extremely expensive and rarely covered by insurance, as was the case for me.

I eventually found some relief with a functional doctor.  A functional doctor practices alternative medicine and focuses on how the environment, gastrointestinal, endocrine, and immune systems interact.  The thing I like about functional doctors is that they really dig into cause and effect, and they dig and dig until they find the root cause of the symptom. 

My doctor was able to help me pinpoint the likely causes of my SIBO and began me on an herbal protocol, which cleared up my SIBO within a few weeks.  So while I still need to be cautious of the fructose I eat, at least one source of discomfort was eliminated!

Moving Forward

The big thing I learned from my time with a functional doctor is the role that stress plays on the body.  You guys, it’s huge.  I believe it causes more illness and distress than we can even comprehend.  And thus…..my career change.  I quit my corporate job and enrolled in a Health and Life Coaching program to be able to help others navigate health challenges and realize their life goals.  And gosh does that make me happy!

I am beyond excited to help you on your journey.  Whether my impact is through the information I post on my blog, inspiration through my lifestyle, or as your Health and Life Coach, I am grateful for the opportunity to show you the Bright Side of Happy.

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