Looking back upon my teen years, it’s no hidden fact that I hated school. I used to skip class to go to the grocery store or mow my grandparents lawn. When I turned 17, I moved in with my grandparents to take care of them and help them around the house. My grandmother suffered from severe emphysema from smoking for over 60 years and was on an oxygen tank. It’s actually a complete shock she didn’t blow up our house from smoking while on oxygen! I just despised being stuck in a classroom all day.
Part of the issue was that I despised waking up to go to school. That was a constant battle with my Mom. Maybe because I have just been a night owl my whole life so it’s really hard to wake up at 6am when you go to bed at 2am. If you ask my mother, she will tell you story, upon story, about me writing notes on my door and locking it “being too sick” from school and days when I flat our refused to go to school. But the more I look into it, the more I realize that the Celiac is the likely culprit of this!
Most of the days I didn’t feel well but I never understood why. I just knew my stomach always hurt and I constantly suffered from diarrhea. My mom thought I suffered from severe hypochondria because it always seemed like there was something wrong with me. Headaches, exhaustion, stomach pains… you name it, I felt like I had it. We frequented doctors about my various ailments and each time she got so mad! Allergy testing, heart rhythm testing. asthma testing, cysts on my ovaries, irritable bowel syndrome diagnosis. It never ended…. or so it felt that way!
Was I a hypochondriac?
Am I a hypochondriac now?
Fast forward to my mid-20’s. Just married, promoted to manager at work… I complained about everything. It seemed there was always something physically wrong with me. The sleeping patterns started to emerge again – up all night, tired all day. Restless sleep. More like laying than sleeping!
From constant battles with headaches, tension pain, joint pain and being tired, to be bigger problems of the last few years:
- From the time I went to the urgent care center because I thought I was suffering from a heart attack (turns out the doctor said my pants were too tight causing heartburn – no joke)
- to the emergency room visit when my ear drum exploded in the pool (from pressure due to extreme ear wax build up – seriously) – what the hell did my new husband think?
- to my knee surgery in 2010 – Lateral Release, no cartilage left in my joint – my knee now floats… (who has a floating knee?)
- to my miscarriage in 2011 – that was a complete nightmare
It’ wasn’t until last year that I think everyone took it seriously. My symptoms were all leading up to the greater problem of celiac. All those headaches. All the trips to the bathroom. All the weird symptoms and health problems over the years, were likely caused by a condition no one diagnosed until I turned 30.
I read an article that said it takes 6-10 years on average for someone to actually be diagnosed with celiac disease.
Since I was diagnosed, I’ve asked my mom and sister to get tested repeatedly. She asked her general practitioner about the testing and he said if she didn’t suffer from bowel distress, she doesn’t need the test. That could be further from the truth. She has plenty of the other symptoms of the disease. This shows you how misinformed doctors are about Celiac disease.
I’m convinced my uncle had celiac disease – he died from pancreatic cancer in 2005.
All of these signs point to problems in the family. Yet the doctor tells her she doesn’t need tested. I’m not a Phd, but I think I probably know more about celiac disease than him.
I feel like I’ve gone off on a tangent but I have a point!
Growing up I had the signs. All the signals pointed towards celiac disease but it took me countless doctors and problems to actually find someone who understood the disease to make a correct diagnosis.
Don’t discount your kids if they start having them!
If your family members don’t have bowel problems but suffer from other symptoms like headache, exhaustion or the 200 other symptoms of celiac disease… continue to educate them on celiac until they get tested!
Don’t give up on people. Don’t brush of the symptoms.
1 in 133 people suffer from celiac disease and it is highly misdiagnosed. If you have confirmed celiac, it is likely your family could potentially suffer from the same – especially children or parents.
We have to do this as a community. We have to be supportive of others and unite together to understand and encourage each other in the lengthy process. We have to help those who were like us – having people question our integrity, making us feel “crazy” with our symptoms.
This is why I created Pretty Little Celiac.