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Friday, February 9, 2018

Why I Fought for My Celiac Diagnosis

"If gluten makes you sick, just stop eating it." 
"Gluten intolerance and celiac are the same thing."
"Why do test results matter?"
"You're just looking for problems." 

I got a lot of "advice" when I was looking for solutions to my digestive issues. While I did have a good support circle, there were still some who thought I was just being ridiculous.  

For years I had asked doctors what was wrong with me. I was always told that my discomfort was completely normal and I was fine. The fact that I didn't *feel* fine didn't seem to matter to anyone. It took several years to even have someone test me for celiac. When the blood test came back negative, I was surprised.... unlike everyone else. I was told that I was probably just gluten intolerant and to avoid it and I'd be fine.  

Fine. If this was "fine" I didn't want it. I was having multiple issues and I couldn't get a doctor to look at all of them together. When I'd call for appointments, I'd be told we could only talk about a couple things at once. I said, "But what if these little things are part of one bigger thing?" That question was dismissed.  

If doctors didn't want to address all of my concerns in one appointment, and I didn't want to be treated for a dozen little things like band aids on broken bones, I was basically on my own. I did a lot of research. Everything seemed to bring me back to autoimmune illnesses, especially celiac. I often thought of giving up on figuring out what was wrong with me, but two things kept me going: 
  • If you have an autoimmune illness, you are more likely to develop another. 
  • Autoimmune illnesses are hereditary. 

It all starts with blood. 

Our blood is made of red blood cells, platelets, and white blood cells, all of which are suspended in a liquid called plasma. Red blood cells carry oxygen throughout the body, platelets allow our blood to clot when needed, and white blood cells are fighters.  

More formally referred to as leukocytes, white blood cells protect us from illness. They go to battle with foreign objects like bacteria and viruses that try to make us sick. When a threat is detected, white blood cells rush to the site to destroy that threat

Sometimes, however, the immune system gets its wires crossed. It sics the white blood cells on the body's own cells as though they are invaders to be destroyed. This is called an autoimmune response. 

Therefore, an autoimmune illness is your body's immune system attacking its own healthy cells, tissues, organs, or systems. Some of the more commonly known diseases are Multiple Sclerosis, Type 1 Diabetes, Rheumatoid Arthritis, Lupus, and, of course, Celiac Disease. According to the American Autoimmune Related Diseases Association, there are more than 100 autoimmune diseases known today.   

In the case of celiac disease, gluten (a protein in wheat, barley, and rye) triggers your immune system to attack the lining of your small intestine, destroying the villi and preventing the body from absorbing nutrients. Contrary to popular belief, there’s no amount of gluten that a celiac person can tolerate. You may not feel sick with every little “cheat,” but the damage is happening inside. Consuming gluten does even more harm to people with celiac than intestinal damage and digestive discomfort. If you’re not diligently avoiding gluten, you’re putting yourself at risk for other illnesses, including cancer. 

It seems that once your immune system heads down this path, it is more likely to make more mistakes. In a 2010 article NCBI stated that people with autoimmune illnesses were 25% more likely to develop another. Patients with three or more co-occurring autoimmune illnesses are said to have Multiple Autoimmune Syndrome (MAS). Several doctors weigh in on MAS in this article 

The short answer is yes. Remember, it starts with blood. Just because they *can* be passed down, however, doesn't necessarily mean they will. A person is more likely to develop an autoimmune illness if their parent has one, but since other factors also play a role, it is not a definitive outcome. 

Of course, I was concerned about developing (or already having) more than one illness. But the real reason I wasn't satisfied with dismissive responses wasn't because of my own health. It was because if I did have celiac, the chances of my kids having it was higher. I didn't want them to deal with this run-around like I was. 

That's why I made myself an appointment with a gastroenterologist and explained why I was there, without a referral from another physician. I had an endoscopy which revealed lactose intolerance and inflammation. The doctor wasn't sold on celiac. He was about to send me on my way, because I was 'fine," when I stopped him and asked about the inflammation. "Inflammation is something we want to prevent, right? So what's causing it?" He didn't have an answer. I wasn't leaving it at that. (Really, who would?!?) So he sent me for genetic testing to see if I had the markers for celiac.  

Well guess what?!? I did, in fact, have the genetic markers for celiac disease! My little gluten intolerance that everyone said was in my mind, was actually a disease that was destroying the lining of my intestines and making me feel totally *not* fine! Who knew? Oh, that's right... I DID! For almost five years, at that. 

Last week, my son ended up at the doctor with unbearable digestive issues he'd been trying to ignore for some time. His doctor started talking about IBS. The potential for years of frustration flashed through my mind. As we discussed his diet and family history, my diagnosis made her eyes light up. Rather than trial and error, she sent him for testing right away. Fortunately, we got our answer from the first blood test. He immediately started a gluten free diet. While he's not happy about it, he's glad to know what's wrong and that he has the power to fix it.