Being Celiac

I have Celiac Sprue so I have been truly gluten-free for over a decade now. The following article chronicles the TWO years it took me to figure out that I had celiac disease.

Being Celiac – Looking back over those two years I think I appeared a healthy, fit and energetic person. I am known among my friends and family for my dedicated fitness routine and healthy eating. However, I was struggling in the worst way. What no one knew at that time, including me, was that my immune system was attacking my own body. I was seriously ill and getting worse every day.

My illness started with the types of symptoms that you try to ignore. In the beginning, all of my symptoms seemed pretty typical and they were easy to mask. I experienced excessive tiredness in the afternoons, extreme hunger all of the time, but “bloated” every time I ate and experienced intense stomach cramping after every meal. All of these seemed like common problems that others faced. I mean, aren’t all of us tired after lunch and hungry at times? As we get older, don’t we think that we have a potbelly?

I quietly tried to self-diagnose and self-medicate. I was drinking a bottle of Mylanta a day to deal with the cramping, swallowing Beano before meals to try to deter the bloating, and I drank caffeine every afternoon to stay awake. I had been eating a lot of antioxidant rich foods, so I thought; maybe I have been eating too many vegetables, too much fiber. I rationalized that white flour products were supposed to be good for stomach aches, so reduced my veggies and fruit, adding more pasta, bread and other starches to my diet. Things only got worse.

In addition to the other symptoms, I eventually started to get a strange pain in my chest after every meal. I had read several articles about fatigue and heart disease. Being that my dad died very young of a sudden heart attack, I started worrying that maybe it was my heart. I went to my Internist; I went to the emergency room, even made an appointment with a cardiologist. After all of these visits, they told me that I was experiencing was normal and they all made me feel like a hypochondriac. I did begin to feel like a complainer and hypochondriac. I think I even began to feel mildly depressed.

By this time, my lower abdominal pain intensified and I thought maybe my OB/GYN could help me. She saw me and told me I may have polycystic ovaries and gave me birth control pills to help the pain. I thought I had my solution.

As the weeks and months went by, my condition continued to worsen. My lymph nodes started to act up and I would get pea-sized lumps in my neck, my groin, and my underarms. Did I have cancer? What was wrong with me? I was getting scared and knew something was really wrong. As a person who has been dedicated to my personal health and fitness, I knew that this was no time to give up. I knew I had to take control of the situation!

I went back to the internist and almost embarrassed, I made him listen to all of my symptoms again. He still did not have a clue what my problem was, but because I mentioned that the chest pain would happen normally after eating, he did recommend that I go to a Gastroenterologist.

After spending 10 minutes with the GI doctor, I was told it was heart burn. He wasn’t interested any of the symptoms other then the chest pain and he prescribed a drug as the solution. When that didn’t work, he gave me another drug. My stomach and chest pain continued to get worse, not better. I began loosing interest in eating because eating to me was associated with pain. After several weeks, I stopped taking the medicine.

I went back to the doctor and who now told me it was stress. Relax, I was told. Well, maybe it was. Maybe I was making myself sick. I took Yoga, I meditated and I was committed to relaxing, but still no change.

The doctor wanted to prescribe anti-depressants to alleviate the stress and depression, but that solution didn’t feel right to me, so I turned it down. The doctor then suggested I might have an ulcer.

I had an endoscope examination and a stomach biopsy. When I woke up from the procedure I was told that there was no ulcer. I was diagnosed with IBS as well as “low pain tolerance”. This would explain why my chest hurt? That still didn’t sound right to me but I tried to accept that diagnoses and left.

I had been diagnosed with so many possibilities in the last two years that I decided I was done going to the doctor. Nothing was really wrong with me. It must all be in my head.

Two weeks after the endoscopy and biopsy I received a phone call from a nurse. The biopsy from the endoscopy showed signs of Celiac Sprue. I had never heard of it. I looked it up on the internet that night. I could not believe what I read! I was a TEXT BOOK case for this! Every one of my symptoms was listed right there on the internet.

One the hallmarks of this disease is that it is a commonly misdiagnosed disease. What surprised me even more is that not one doctor I had been to had even suggested this as a possibility! I was accidentally diagnosed with Celiac Sprue.  They weren’t even looking for it.

I had been diagnosed with everything from chronic fatigue syndrome, to polycystic ovaries, IBS, stress, ulcers, depression, EVERYTHING but Celiac Sprue in the two years.

To make matters even more ridiculous, Celiac Sprue is an auto-immune disease. The tendency for auto-immune diseases is genetic. Since many family members also suffer from other autoimmune diseases, I wondered how did all of these doctors miss this? It is because Celiac Sprue is still not widely known or understood.

What is Celiac Sprue? Basically, a person who has Celiac Sprue has a body that does not recognize gluten and does not digest it. Every time a person with Celiac Sprue eats something with gluten in it, their immune system attacks their digestive track and creates all of the symptoms that I was experiencing.

What do you do to treat Celiac Sprue? The doctor’s advice sounded easy at first, “Just look for things without gluten as an ingredient”. Turns out that it was a lot harder then I had thought. Gluten is by product of wheat, rye and barley. I had no idea how many things have those ingredients. Obviously bread, pasta, crackers are off the menu, but gluten is in just about every processed food. Candy, preservatives, marinades, packaged foods and even soy sauce!

I thought that I ate healthy before but what I eat now is extremely healthy. Healthy has taken on a whole new meaning. I miss the foods I used to eat, but after just a few days of being gluten-free, every single symptom went away. I had forgotten how good feeling “normal” could be!

One surprising fact I discovered is that it is estimated that approximately one out of every 200 people in the US may have undiagnosed Celiac Sprue! This is a grossly under-diagnosed disease and such an easy one to treat!

I am not upset that I have this diagnosis. Actually, it is quite the opposite! Not only do I feel great everyday now, but I eat healthy without any temptation. I don’t want to feel badly, so eating bad is never an option. Also, many restaurants are very accommodating.

Whole foods market list many foods as “Gluten Free” so I do not need to scour ingredients when I shop there. They even sell gluten-free pizza and cake mixes! PF Changs, Outback Steakhouse and many other restaurants even have full gluten-free menus.

I want to educate others on this commonly misdiagnosed disease. If you have any combination of the symptoms I had, talk to you doctor to find out if you should be tested. A blood test determines the gene and a biopsy determines the extent of the damage. Untreated Celiac Sprue can be very serious and life threatening. Left untreated, it can lead to lymphoma and other cancers. Treating Celiac Sprue may alleviate all of the symptoms and can greatly lower your risk of digestive track cancers.

– Natalie Jill

I share a FREE guide to going gluten free HERE

As a licensed sports nutritionist , a celiac and a mother of a daughter with nut allergies, I am very versed on allergens and intolerance as well as  treating type II diabetes and autoimmune diseases through diet. Please look HERE for more information

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