When I was diagnosed five years ago with celiac disease, my doctor nailed it right away.
I didn’t really think twice about it at the time. He’s a doctor. I was a sick patient. He did his job.
But since I’ve started this blog, I’ve come to learn that my diagnosis was the rare exception and that most in the medical community are absolutely clueless about our disease.
And even after we finally get the diagnosis, we are simply told to not eat gluten and are shown the door.
“But…but…but…what has gluten in it?”, we ask.
“Look it up.”, we are told.
And that’s it. No follow up care. No nothing. We are on our own to begin a new life that we know nothing about.
Is it ignorance? Laziness? Arrogance? All of the above?
This leads us to today’s Celiac Rant of the Day.
It’s a real powerful story from somebody who has been through the ringer and feels desperately overwhelmed.
Any words of advice would be most appreciated.
Oh…and if you are a member of the medical community, I would LOVE to hear your response.
I am a freshly diagnosed Celiac. I’ve always known something wasn’t right. Everybody always seemed healthier, energetic, happier than me. I have weird issues that nobody can explain. Depression, anxiety…they threw pills at me for that. My skin sometimes hurts in a weird tingly ice cold pins and needles way, and I get weird rashes on my scalp that make me look like I’m scratching at lice bugs. I can’t remember things.
They did some tests but nothing came of it (terrified me half to death when they scanned for brain tumors).
When nothing conclusive was discovered I was just… forgotten.
Who cares if this 21 year old has joint pain? It’s just inflammation, take it easy, take some more pills, and it will go away. I got labelled a hypochondriac. I was making it up.
Then, about 3 months ago, it was as if my body just gave up. I had no energy to do anything. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. Then I started getting ‘actually’ sick. In a way that counts, I guess. Up at 3 am, going to the bathroom every 20 minutes. Getting incredibly nauseous after eating. I lost a lot of weight in a very short time period. Finally my doctor figured shit out. Countless tests later, and he set up an appointment to talk about the results.
I was told I have Celiac. That I can’t have gluten. That I probably inherited it.
I was told if I cut gluten out completely, I would feel fantastic and everything I’ve been complaining about since I was in my early teens would go away.
“What is Gluten?” I asked.
“It’s in wheat. Just watch out for it. Read labels.”
Then I was sent on my way.
I have spent far too long scouring the internet for information. My friends are telling me it’s not that hard to avoid wheat, it’s not like it’ll kill me. Christmas dinners are being planned and people are getting annoyed. I don’t even know how to tell them what to look for, because I haven’t figured it out yet.
I am so incredibly lost and overwhelmed and angry that I have to make all these changes, and I don’t even know what changes to make or how to make them. I have absolutely no medical guidance, and the internet is full of contradictory information. Soy is good, yet it contains (through cross contamination) almost 3000 ppm of gluten…but some Celiacs eat soy without any issue.
I went to a local bakery that advertised gluten free options. Unfortunately they are custom ordered gluten free cakes, and when I asked the woman about cross contamination, she looked at me like I was crazy. My good friend is taking me out today for lunch. I am not looking forward to trying to figure out the restaurant when I don’t even know all the right questions to ask.
I hate change.
I hate this.
I should be happy I have a diagnosis, but I feel like the medical community has abandoned me.
I don’t know what I hope to accomplish by venting. I just need to not feel so overwhelmed right now.
Thanks for listening.
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac.
With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away.
There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.
Don’t you feel better already??