Our Celiac Disease Story

This has been a hard topic for me to put into words. I’ve had to explain to countless family, and friends alike. But it’s something different and awkward to put it on the page for the world to see. I’m not looking for sympathy. But, I believe that everything in life is a balance. The good with the bad. This is also real life and I think it’s important to show you where this blog and the people behind it are, where we have come from and why we are here now.

 

My partner, Daniel, has celiac disease.

This is our story of how Daniel was diagnosed and how in a single moment our lives were flipped upside down.

For those of you who don’t know, “Celiac Disease is an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.” (Celiac Disease Foundation)

I’m sure you’re thinking, “That’s no big deal,” or “Lots of people have Celiac Disease.” Six months ago, I would’ve agreed with you.

It was Christmas Eve, Dan only had the one day off from the restaurant. When you are a chef you are the one who has to work the party, instead of celebrate.

That was when the pain began, or at least when we remember the pain being constant. The next two/three months were agony for him. It started with sharp pain in his lower abdomen.

“You probably just have the flu. You should rest, maybe call into work,” I would say.

He would reply, “I can’t, we are already short staffed.”

The grueling, amazing life of a chef. It takes a certain kind of person to be a chef, 10- 15 hour shifts, minimum, day in and day out. You have to be passionate that’s for sure.

“Maybe your ulcers are back,” I’d say. Remember, chef equals long days and long nights, which used to mean lots of energy drinks which equaled ulcers.

Finally after a couple of weeks of not being able to shake this “flu,” he called into work and went to the doctor. They did a full blood panel and sent him home with a prescription for the nausea.

The next day, he got a call that his blood work came back clean. “If you don’t feel better in a week, come back in and we will do an ultrasound.” No change. Ultrasound. Clear … no ulcers.

Then I would come home from work and find him in the fetal position.

He wouldn’t get out of bed on the one day he, luckily, had off that week.

Then he couldn’t keep anything down for days. He would barely make it through a shift without having to rest. He was weak.

He never wanted to eat anything. I’d force feed him saltines. But he’d immediately go into spasms and get sick. He’d lost so much weight.

Finally, after two months, he went into the kitchen and told the Sous Chef, “I can‘t work tonight. I have to go to the doctor.”

Later he told us that Chef asked where Daniel was and Chef replied, “I sent him home, there is something wrong with him.”

I remember the day vividly. Daniel called me at work and said that he was going to a stomach specialist in the next town over. But when he arrived they told him they couldn’t see him without a reference. That would take weeks.

He whispered to me, “I can’t take it anymore…I’m going to the ER.”

I asked if he wanted me to go with him. He said, “no” it would just be a few hours and he’d call when it was over.

He finally called six hours later, as I was closing up. The hospital decided to admit him. He was on the oncology floor, room 347. That was the longest 45 minute drive of my life.

We spent the next 11 days in the hospital. He lost 40 pounds.

They ran test, after test, poking and prodding. The same stomach specialist, he tried to see before, was called in to figure out what was causing a healthy, active, 25-year-old male’s body to reject any sustenance.

They had him doped up on a cocktail of different pain medications. They ran test after test. He wasn’t allowed to eat anything for three days, because it would affect the test results and he’d have to start over.

 

Finally, after countless tests and four days in the hospital, they had him swallow a pill with a camera that would take two pictures every second. The camera discovered he had three intussusceptions in his small intestine. Which, in layman’s means his bowel was telescoping over itself in three spots.

But they still didn’t know why? What was the cause?

IBS, Crohns Disease, a virus, ulcers, Ulcerative Colitis….Lymphoma….

Intussusceptions aren’t common in adults. The doctors said intussusceptions are usually common in infants and rarely found in adults.

Surgery was scheduled to remove the parts of his bowel that were obstructed and then have them biopsied.

The surgery went well and he did great. He lost a foot of his intestine.

My wonderful man is amazing. After coming out of anesthesia all he cared about was how I was doing and kept apologizing for not being present over the last few months and how much he loves me. Lol I told him that really doesn’t matter, you were sick, and now we will make you better.

The next day, I had to go back to work, he called me about the results of the biopsy. Celiac Disease.

Thankfully, he had to rush off the phone because the nurses needed to check his incision. I hung up the phone, sat on the cold cement floor in the storage room and cried as 9 days of worry, fear, frustration and relief came pouring out of me.

And then in the exact same moment the confirmation that our lives and dreams were over in a split second.

I haven’t really talked about this on here yet, but I too worked in restaurants, as a manager/events coordinator. Restaurants were OUR dream. That was the plan.

On top of our careers, it was our hobby. Every free day, trip, event or plan was spent trying the local or a new restaurant. It was our thing. A game of how we would do it better or what experience or tiny detail we would take and implement in our restaurant one day. Particularly, gastropubs…and beer.

We wanted to make fine dining accessible to everyone. Breweries were our first date and our first vacation together. We were already planning all of the amazing ways we would incorporate beer into our menus and how the bar would look and the collaborations we would do.

But in that moment, I realized those days were over. Our life as we knew it was over.

I know, as horrible that moment was for me. It was nothing in comparison to the loss Daniel feels.

Daniel is not just a line cook. He is an amazing, talented, creative Chef. Not only has he helped open several restaurants, he has worked at some of the most elite kitchens in the world, alongside some of the best Chefs and Restaurateurs.

Four time Best Restaurant in the World, Noma.

If you haven’t seen the documentary “Noma, My Perfect Storm” on Netflix, you need to. And you will see Dan and his hands several times.

Yes, there are many people who have Celiac Disease, who are also Chefs or still work in kitchens. We even went to a local restaurant whose pastry chef has celiac disease. Everyone’s intolerance is different, and Daniel’s is very severe.

Daniel had such a violent reaction, that he isn’t willing to take the risk. He made the decision to leave cooking behind, because how can you be a chef when you can’t taste your own recipes, or you can’t make any pasta or breads from scratch, because you can’t inhale the flour. If Daniel did, by chance, at work ingest gluten in some way (i.e. inhaling flour) it could destroy the small amount of intestine that he has left and we wouldn’t even know what was going on until we were back in the hospital removing more of his intestine and living with a colostomy bag.

The last six months have been a nightmare, if I’m being honest.

Some people will spend their whole lives searching for their passion and to have it taken away from you when you were lucky enough to find it, is heartbreaking.

On bad days I remind him that he will always be a Chef and no one can take that away from him. Not even his immune system.

Now we will find a new dream, a new adventure, we will search out gluten free breweries and restaurants. And we always remind each other it wasn’t cancer! The other option was lymphoma and we are grateful every day that we just have to change our diet. It could always be worse.

Cheers!