Are there things in your life that you keep secret from those closest to you?  This blog for example, my ‘in real life’ friends know nothing about it.

What don’t you talk about?

I want to write about my experiences because maybe it will help someone else.  It took me 30 years to find a diagnosis and if I can help even one person from suffering the same fate then I’m happy.

This list is a hard one to write.  I’m still on my way to recovery and won’t feel ‘normal’ for a couple of years yet but I still have always known things weren’t right.  I don’t even know what normal is so this list may grow yet as I discover what things improve even if I don’t recognize them as a problem now.

Celiac Disease is suspected to affect approximately 1 out of every 133 people.  Fewer than 5% ever receive their diagnosis.  The other are either asymptomatic or have the wrong diagnosis such as IBS, leaky gut or pretty much anything under the sun.

The problem with Celiac is it’s a systemic disease.  It doesn’t always present as a gastrointestinal problem.  There are far more symptoms than what I presented with so don’t take this list as anything other than my experience.  Also note that all of these symptoms can be many other things which is a large part of why this is so hard to diagnose.

• Abdominal cramps, gas and bloating
  Did you know that a few days after the Hubby met me he asked me if I was pregnant?  He pointed out that I looked rounder than a few days prior.  He must have already fallen in love or something because I sat down and explained to him what I had already been through and that being with me might not be a picnic.  He stuck around.  If often double over in pain and blow up like a balloon.  He hit the nail on the head when he thought I looked pregnant.
• Anemia
  My iron levels are brutally low.  I’m not sure exactly in what measurement they check our hemoglobins here in Canada but I do know that my grandfather was considered critical and had a transfusion when his dropped to 88.  Mine varies.  I’ve seen it as low as 93 and as high as 118 (which is still considered very low).  This was eventually the symptom that caught the attention of my OB.  She was the first person to mention Celiac to me.  She said my health just didn’t add up and the iron is what lead her to suspect Celiac.  I love her for that.  She was there to save my children’s lives but has ended up saving mine in the process.
• Borborygmi (stomach rumbling)
• Diarrhea
  This wasn’t always the case.  This started after a surgery 10 years back.  Since then it’s become a viscous way of life.  Every visit to the bathroom is painful, I break out in hives, my temperature shifts to boiling then to freezing, it’s hard to breath.  Not a pretty picture.
• Failure to thrive
  My mother would be better off telling you about that.
• Fatigue or general weakness
  This is by far my worst symptom.  I wake up exhausted.  It amazes me that I am able to raise 3 kids.  I have fallen asleep on them way too many times.  If I didn’t have responsibilities I could probably sleep for days at a time.  It’s coupled with insomnia which is evil.
• Flatulence
• Foul-smelling or grayish stools that are often fatty or oily
  Do you really want to know?
• Gastrointestinal symptoms
• Hypoglycemia
• Infertility/Miscarriage
  Getting pregnant with Thing 2 took 13 months.  We lost one between 2 & 3.
• Nausea
  All. The. Time.
• Pallor (unhealthy pale appearance)
• Peripheral neuropathy (nerve damage)
  This is pretty big for me too.  I have zero hand/eye coordination.  I’m just generally clutsy.  I fumble my words.
• Stunted growth in children
  I’m barely 5 feet, nuff said.  I am the shortest member of my immediate and extended families.
• Vitamin deficiency
  I take b12 injections regularly and my blood tests show pretty much everything is off.  I drink more milk than my kids combined yet my calcium is rock bottom.
• Weight loss with Voracious appetite
  My current weight is 46kgs (101lbs).  I can eat like a pig but it just passes through.  Although it has become worse in the past few years as I really have a love/hate relationship with food.
• Obesity
  I’ve never been obese per say however I did have this weird change in weight around the time I met the Hubby.  I gained a lot of weight what felt like overnight (about 40lbs) and lost it just as mysteriously about 6 months later.
• Migraines
  This has only been in the past year.
• Canker sores
• Depression/anxiety
• Acid reflux/heartburn
  I had to have surgery in regards to this.
• Brain fog
  This one is impossible to explain unless you’ve had it.  The only way I could ‘guess’ it compares to is the brain fog of a hangover.  I’ve always just described it as the inner me and the outer me.  I was in my teens before I ever realized this wasn’t normal.
• Numbness
• Tooth discolouration/enamel loss
  My kids have more teeth in their mouthes than I do.  I’m saving up for dental implants (full mouth).
• Malnutrition
• Resistance to medications
• Organ failure
  Remember my gallbladder?

There are still more but that’s all I could think of off the top of my head.  Some I don’t even know what to call like the fact I catch every virus.  I died (was resuscitated) when I had my first vaccinations and pulled through bacterial meningitis at 11 months… the trend continued through life.

So that’s my list.  I hope it helps someone and educates the rest on what this disease can do.

I’ve been sitting on this a few days now.  I have so much to write on the subject but I don’t even know where to begin.  Maybe it’s best if I break it up into a few posts?

I finally have an official diagnosis for what has made my 30 years of life miserable.  It IS Celiac Disease.  The biopsy I had showed total villous atrophy.  That means that every single nutrient absorbing hair in my intestine has been completely destroyed.

I’ve been gluten free since the day of that biopsy (so 2 months now).  I feel better.  I still have a long way to go but any improvement is still improvement.

When I heard the news it was the best day of my life.  It’s hard to explain that because no one wants to hear that they have a life threatening autoimmune disorder however what everyone needs to understand is that when you’re sick and no one knows why it is the most frustrating feeling.  Now I finally have an answer.  Had this answer been found when I was an infant I would have had a completely different life.

Now I begin the road to recovery.  More posts on the subject to follow.

Don’t grow up too fast little man.  I love you.  Happy third birthday.

I was told last night that my Grandfather was ill.  He doesn’t want to fight it.  After making his wishes clear he slipped into coma.

It’s a waiting game now.  We’re not sure if we’re looking at hours, days or even weeks but unfortunately the inevitable is coming.

I’m at peace with this oddly.  I know it’s what he wants so it’s ok.  I’m sad of course and will miss him but I’m ok with it.  Most of our family feels this way.

I will be traveling to my parents shortly.  We’ve decided to wait until things come to be since I will be going alone and my being away means the hubby has to figure out the whole work/kid routine for while I’m away.

Having said that excuse the interruption here and I promise when this is all over my posts will become more positive.

*Update* My Grandpa passed in the early hours of November 1^st.