This is how I picture Mr. C. (That's how I refer to my Celiacs)
I get mad when people try to explain to me why I got sick or what I should have done differently. I'm sure that over time and likely when I'm feeling better, I will not get mad and will be able to talk more freely.
Today, I'm going to talk about my Celiacs diagnosis.
First of all, Celiacs is an auto-immune disease that people are genetically pre-disposed to having. I did not do anything to cause this.
It is NOT a flare up. It is not an allergy or dietary fad. I get VERY SICK when I eat gluten containing items and serious damage has been caused to my intenstines which causes a whole host of problems. I get sick when there is cross contamination, meaning that my meal did not contain any gluten but a plate or knife or something else touched my food.
When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.
Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease.
Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Left untreated, celiac disease can lead to additional serious health problems.
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FOR YEARS, I have googled my symptoms only to come up empty handed. This is normal. On average, a person with celiacs is misdiagnosed for 6-10 YEARS before they get a proper diagnosis.
For reals, I am NOT blaming doctors. It is a combination of issues.
#1 A person can be asymptomatic for many years before having problems.
#2 The symptoms can start slowly. This is what happened to me. I can, now, look back as far as 2012 and see that my symptoms were starting. But they were so few and far between that it wasn't anything that I would have even brought up to a doctor. However, the damage to my insides had already started.
#3 When there is no history of celiacs, there is no reason to do a test. It is very likely that others in my family have/had it and didn't know. My family is so large and spread out, anyone could have anything, and no one would necessarily know.
#4 When I started googling my symptoms, NOTHING came up. NOTHING. Dr. Google isn't a good place for medical advice, right? BUT, my blood tests were all coming back normal. I was trying to find out what was wrong with me. So, I could only assume that I was ok....until I found out I wasn't.
#5 Even today, with a diagnosis that showed my numbers to be at the very top of the scale, I STILL don't have many of the symptoms that many celiacs have.
I did not get a test until my hematologist told me that my body's ability to absorb iron was dropping at an alarming rate. She recommended a celiac test because that is the #1 symptom of Celiacs.
I'm writing this today to tell you
I DIDN'T DO ANYTHING WRONG. This is a genetic issue that I have had my entire life.
THE DOCTORS DIDN'T DO ANYTHING WRONG.
This has been incredibly difficult and probably the most emotionally challenging thing that I have been through.
Unless you have this, you have no idea what it's like to be out all day, get hungry, and realize YOU CAN'T JUST GO GET A PIZZA or grab something fast. You have NO IDEA what it is like to worry about cross contamination.
I know that pretty much everyone who is reading this, isn't blaming me or doctors or anything. I needed a place to vent. That's all.
I'm feeling better, physically, now. It's going to take me time to get over some of the emotional hurdles. The other day, Mr. T and I were talking, and I told him, "it's one thing to be gluten free by choice. If you decide you want pizza, you can go get pizza. I can't. It's so hard. I have to meal plan like never before, and things will STILL happen that cause me issues."
I don't particularly care what people think, in general, but I'm not in a place where I can deal with it right now. I *will* be, but I'm not right now.
In the meantime, I'm still trying to get answers on other issues. Dealing with referrals and insurance has been an absolute nightmare. There will be more down the road....you lucky readers.
All I ask is that you listen without judgement....it's that walk a mile in a person's shoes thing.
