No, I am not a hypochondriac… I suffer from Celiac disease!

Senior Prom

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!

Maggie – Our Boston Terrier Snoozing on the Couch!

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

    Knee Surgery

My Nurse, Coach πŸ™‚

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.

2 family members on my mother’s side suffer from schizophrenia. Studies show a correlation between undiagnosed celiac disease and higher incidents of schizophrenia.

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.

Rebecca

This picture of my sis and I is just too funny not to post!

Advertisements

10 responses

  1. OMG. I could have written this right down to the floating knee(s). I have 2 of them! And (gross I know) the earwax thing, now I see where its one of those “who knew” signs. Its ironic the more I learn, I feel better that it wasn’t just in my head but am angry that I missed out on so much because I never knew if it was going to be migraine, stomach or what that was going to throw me for a loop. I am recently diagnosed so I am still going thru a roller coaster of emotions (from having a life that was very food centered to now almost being afraid to eat) but I am very thankful that it has a name and I do not have to do anything hurtful to my body (meds, god forbid chemo etc) to fix. I have an amazing husband who is incredibly supporting and watchful (no cheating EVER). All in all, a lucky gurl.

    • Lory-

      Having a supportive husband is the #1 reason why I think I got through all this. He eats what I eat. Doesn’t give me a hard time when I don’t feel well and is my biggest supporter and advocate. I hope everyone has that person like us, but I realize not everyone is as fortunate.
      Hopefully, this community will help those that don’t have the support and we can create it for them online!

      Thanks for the post, it was fabulous!

      Rebecca

  2. Oh my gosh I had no idea the ear thing was celiac related too… I have been gluten free for a few months and just starting to feel really good when doc said let’s do celiac biopsy and I need to go back to gluten for 2 months prior. It has been only a week and I am feeling cruddy… symptoms worse than before I gave up gluten. But I really want to know for sure.. and even if it turns out to be non-celiac, I know that gluten is not good for me.

    I wish you increasingly good health! And will follow your blog – found you through our mutual friend Sara W.

    • Elle-
      Thanks for reading! I honestly couldn’t imagine going back to gluten after almost a year without. Just when I have a snack I get so sick, I wouldn’t be able to function!!
      I appreciate your comment and hope that the community I’m building here will help you πŸ™‚

      Rebecca

  3. Hi Rebecca,

    I was just recently introduced to your website by my friend Keri. I was just diagnosed with Celiac’s in July, and it’s so helpful to know that other people struggle with the diagnosis, and to learn how they are adjusting and coping. Sometimes I try to remind myself that in the scope of things it’s not a big deal, and I get angry at myself after I have a little meltdown because I hated the gluten free pizza that I tried at a pizza place. But, sometimes it just seems very depriving and overwhelming! I miss being able to go to a reastaurant and order whatever I want.

    You coudln’t be more right about not having to have bowel distress to have Celiac’s. My mother was diagnosed 20 years ago, and she has the typical severe diarrhea problems within an hour or so after she accidentally eats gluten. I don’t have the same symptoms at all. My iron level has been low for years, but I always assumed it was just my normal level. I went to my doctor for a general checkup – embarassingly – mostly because my hair was a disaster — falling out excessively, and it felt like hay. At the appointment, I also talked to him about how I had muscle fatigue, and was always tired, and lived on tums, and had constant heard palpitations. My stomach seemed to always feel irritated — nothing major – just always uncomfortable. After having the standard blood work, my doctor discovered that I was severely anemic, which resulted in a later diagnosis of Celiac’s with an EGD. It’s only been a couple of months, and I no longer live on Tums, my heart palpitations have gone away, I feel stronger everyday, and my hair is growing back!! So, keep encouraging your mom and sister to get tested. You never know when the ability to feel better is right around the corner!

    Thank you for taking the time to write this blog. I can’t tell you how helpful it is after one of my mini meltdowns to find support through your website and the comments from your followers!

  4. OMG OMG! Is it REALLY you? In the last picture? I’m so happy to find your blog. It is not only story about fat (sorry for that) girl who became real princess, but it’s great story about health, it is about strong girl who can fight celiac, control it, live her life and be really beautiful and happy. I’m very glad for you Rebecca.

    Best Regards,
    Nicola Potts

  5. OMG OMG! Is it REALLY you? In the last picture? I’m so happy to find your blog. It is not only story about fat (sorry for that) girl who became real princess, but it’s great story about health, it is about strong girl who can fight celiac, control it, live her life and be really beautiful and happy. I’m very glad for you Rebecca.

    Best Regards,
    Nicola Potts

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s