Worried and Scared

I'm not sure I'm going to click "publish" on this post but I can't keep myself from feeling the need to write it out so write it out I will.  If I do hit publish and you feel the need to comment that I'm just a whiny whinerton who needs to shut up unless she has real problems, you can just skip right over to some other place on the internet.  I don't need that today.

Today may go down as the day that changed our family.  I know that sounds melodramatic and ridiculous but it's how I feel right now.  I'll admit up front that I'm upset and a scared and feeling a large dose of panic about this so that undoubtedly makes this all seem worse.

To explain, let me go back a bit.  Liam has been having some troubles off and on for a few months that finally led us to take him to the doctor.  They were mostly gastro-intestinal issues so I'm not going to get graphic about it.  When Scot took him to the doc, they weighed him and he'd lost two pounds.

That's a big deal for Liam - a very, very big deal.  Liam is almost 7 years old and he now weighs 44 pounds.  He's very skinny and also a bit short for his age.  Much of this is due to his genetics but the fact remains that he gains weight excruciatingly slowly and cannot afford to lose any of it, much less two pounds.  It is not unusual for Liam to spend an entire year gaining that much weight.

When Scot discussed all of the seemingly disparate symptoms with our pediatrician they decided to run some blood tests on Liam and get an abdominal x-ray.  I wasn't able to be at the appointment so when Scot called to tell me what was going on, I got upset.  I thought it was a simple matter to deal with (hey! my kid's butt won't stop itching!) and instead they walked out needing diagnostic tests.

One of the blood panels they ran was to rule out Celiac Disease.  Our pediatrician basically said that he didn't think this was really Liam's problem but better to run everything at once rather than have to take him back for a second stick later.  We figured that if anything came back wonky, it would be his iron level.

His abdominal x-ray was normal.  We found that out the same day they did it.  Today I got the call about the blood work and one of his numbers on the Celiac panel was elevated.  To give you an idea, the number should be below 20 for a negative result for Celiac.  20-30 is a weak positive.  Above 30 is a stronger positive.  Liam's number was 31.  The other measurement on the Celiac panel was normal.

What does this mean?  It means more tests.  It means a specialist.  It means more investigation.  It's possible, given his fence-sitting results, that he does NOT have Celiac.  It's also very possible that he does.

Now, Celiac has been getting a lot of attention recently as diagnoses are on the rise - not because incidence is increasing but because doctors are getting better at recognizing the symptoms.  So, it's possible you've heard that the 'cure' (not really, it doesn't go away) for the disease is a gluten-free diet.

Great, you say.  What's your beef?  Why are you freaking? Feed him different food and he'll be fine.  If you have to deal with an auto-immune disorder, it's best if it's Celiac since it's treated by dietary changes.  You're golden!

Except we're talking about a 6 year old kid with food issues.  He is a supremely picky eater whose favorite food is PASTA of all things.  We've had dozens of conversations with Liam about the state of his eating habits and he always says "OK, Mommy" and promises to try new things.  Then, when push comes to shove, he can't do it and he's puking up corn (or whatever else we've asked him to try).  Part of my panic is about the very real possibility that World War III is about to erupt in my household over dietary changes.

Celiac is still an auto-immune disorder, 'good' one or not.  And that means he'll have increased risk for a lot of other potentially awful things.  Doing some basic reading up on it today left me breathless and in tears.  I'm scared for my kid.

People with celiac disease are more likely to have:

• Autoimmune disorders such as rheumatoid arthritis, systemic lupus erythematosus, and Sjogren syndrome
• Addison's disease
• Down syndrome
• Intestinal cancer
• Intestinal lymphoma
• Lactose intolerance
• Thyroid disease
• Type 1 diabetes

Source

Gluten-free means huge added expenses to our grocery bills.  It means absolute vigilance about everything he puts in his mouth.  It means he'll never be able to eat the sweet treats his classmates bring in for birthdays or that are a part of class parties.  It means the family recipes that I've long treasured and enjoyed baking with him will no longer be safe for him to eat.  I'm sad about the loss of those things.

I'm scared and worried about navigating the enormous amount of upheaval this will cause in our lives.  Of couse I believe that we can get through it and figure it out.  Of course I know that we have doctors and professionals and the internet to help us through.  But, for now - just for today, I feel overwhelmed.