Updated: Mar 6
This was the struggle I had to face for the last decade while living with the autoimmune disease Celiac.
Usually when I tell someone that I have Celiac Disease I have to explain that I follow a strict diet. The person tends to look perplexed and then informs me that “You’re so skinny. You don’t need to be on a diet.”
I hate this part. I hate having to explain my disease to anyone because on the outside I look healthy.
It’s not as if the person I am talking to can see inside my stomach and witness the damage that consuming gluten will do to my body. It has taken a decade for my insides to become healthy and match my outsides.
Whenever I begin the long process of explaining why being gluten free has nothing to do with staying skinny but all to do with staying alive; I watch their eyes glaze over. It is nearly impossible for me to convince them that eating processed gluten-free bread has just as many calories, if not more, than regular bread.
I am forced to live this way, or eventually waste away and die, because I have shredded my stomach lining from eating delicious, delicious, food.
I’ve learned when it came to explaining Celiac to people I needed to keep it simple. I will tell them that a gluten attack could affect my joints, act like a laxative, or it might be the equivalent to eating glass.
These answers usually satisfy their curiosity. I personally don’t enjoy going into the details of how I am uncertain on which way I may be affected. I leave out that it nearly takes a week to recover because my immune system has been lowered. I also leave out that while my body is under attack I am praying that I haven’t come in contact with anyone who is ill since their two-day sniffles could hang around me for nearly a month.
At 22 I was 5ft tall, 92 lbs and my stomach lining was shredded.
It had taken years for doctors to believe that I was actually ill.
At 18 I started the investigative process because I could no longer live in pain. My hands would lock up as if I had rheumatoid arthritis and my sciatic nerve felt as if it constantly was on fire. All the pain made it impossible to sleep.
The first doctor I spoke to was for my arthritis symptoms. He was baffled because my body was exhibiting all signs of rheumatoid but nothing in my blood work came back positive. It wasn’t long before he wrote me prescriptions for painkillers and muscle relaxers because there wasn’t much else he could do.
After meeting with him I started the three year long process of finding out why my body was rejecting food.
The first gastroenterologist did blood work and took samples of my stomach lining but he did this after telling me to fast. Thankfully I’m not a great listener and I am hypoglycemic. I knew there was no way I could drive 30 minutes with a foggy brain to get my blood work done. So I ate half a bagel thinking I was safe. What I thought was no big deal actually made the results confusing.
Here lies the first problem about this disease: it’s hard to test for Celiac unless your body is attacking itself and the only way to do that is if you’ve eaten the food that causes the attack.
So, because the blood work had such low levels for Celiac and my stomach sample didn’t he dismissed the results. I left the office with a diagnosis of IBS and a new prescription.
This brought my pill count to six.
Six pills that may cause drowsiness.
Well when you take six pills, that may cause drowsiness, they will cause drowsiness. So I took all the pills and I still could not eat.
This problem brought me to gastro number two and three.
Two colonoscopies and countless amounts of blood work later I wasn’t sure if I had anything less to test.
I was getting blood work done so often that I was in the lab twice a week every two weeks. This happened because of a fault in the medical system. I had requested the labs to share the information with all my doctors but the results were never sent to the offices at the same time.
The doctors were all looking for different reasons for my illness but none of my symptoms were a perfect match for the ailment they thought plagued me.
My bones, not my muscles but my bones, began to hurt.
My rheumatologist sent me for a bone scan. When the results came in he said my bones looked like they belonged to a 45 year old woman, not a 20 year old.
I took more pills to help my bones heal and for the most part they did help. I felt a weight lifted off my shoulders and that I might have finally figured out what was wrong with me.
That was until one night when I was drinking Guinness beer and my throat started to itch. Shortly after it was becoming tight. Thankfully I was with a friend who had a shellfish allergy. They suggested that I should take a Benadryl.
Things did get better, not 100%, but I didn’t die so I racked it up as a win.
I told one of the gastro I was seeing about what happened they said it was unrelated. Yet they gave me even more pills to combat the newest problem.
If you’re keeping count I was now up to ten pills a day that would allow me eat and function.
I use the term function lightly because 95% of the time when I ate gluten I was left with a head fog. The fog was so aggressive that it felt as if I took sleeping pills and stayed awake for far too long.
Taking ten pills that may cause drowsiness and living with a constant head fog; it was a wonder that most of my professors didn’t think I was constantly high the entire time I was in class.
At 21 I was tired. I was tired of being sick. I was tired of the pain. I was tired of doctors telling me that I was making things up and hearing their side comments about how I might be a hypochondriac. I still can’t believe that one male doctor suggested that females tend to exaggerate their pains.
After that lovely dialogue, I found a new fourth gastro. This time it was a woman and while we were in her office she listened to me explain my medical history while reviewing my chart.
I stopped talking when she chuckled closing the folder.
“I don’t know why they didn’t see this before,” Dr. K said. “Because the first doctor, if not the second but most certainly the third doctor should have seen you have Celiac Disease.”
“What? What is that? What pills do I need to take?” I was so excited to hear that I wasn’t crazy and there was a name for everything I felt.
“There isn’t a pill. It’s just a diet.”
She soon went into great detail about what I could no longer eat. How I had to scan labels on everything including shampoos, lotions, and makeup.
This was all in 2006 or 2007, I can’t remember fully, but back then gluten-free food was awful. Bread tasted like sponges. There weren’t many options out there for me.
I would “fall off the wagon,” as my mother called it, eating a whole bag of goldfish and laying on the bathroom saying the pain was worth it. Some days I’d sneak out and get a spicy chicken sandwich from Chick-fil-A.
I was like a diabetic in denial; I knew what horrible things I was doing do my body but I didn’t care.
In 2009, I said, “Fuck it. The pain isn’t worth it.”
Gluten free started to become a fad and there were more options for me. But really my health was all that mattered. I couldn’t spend days anymore lying in pain. I was done with college and had to grow up. People weren’t going to excuse me because I was an idiot. This was the last year I was under 100 pounds.
Now I am healthy. In the beginning it was weird to not feel sick or in pain every single moment of the day. I almost missed the feeling because it was so normal.
But now if I “get glutened” I know within minutes. It’s been out of my system for so long that the attacks happen quickly and painfully. Even a small amount like eating french fries that could be cross contaminated has become a big decision. I chose to eat things that are naturally gluten free unless I want pasta or a burger with a bun. But I do love lettuce-wrapped burgers, so they tend to win.
My journey isn’t over.
This a lifelong process, and with 30 closing in on me, I know kids are in my future. I have to be even more careful that if I get pregnant I do not eat a single thing with gluten because it can cause a miscarriage. Thankfully that chance is slimmer since I have been pretty good about following my diet, but there is always that chance that a waiter doesn’t take me seriously or someone in the kitchen misses it.
Maybe more people will start to understand this isn’t a fad but a disease. I still cringe when asking for my special menu because I know they are thinking “Look at the skinny girl just being trendy.”
Sorry, I’m not being trendy, I'm just trying to stay alive.