***UPDATE at the end of the post***
Hello my Friends…
Some of you know that I was diagnosed with Celiac Disease 12 months ago.
Because I read everything I could find in those first months after I was diagnosed, I think it’s important to put my story out there in case at some point in the future, someone is discouraged with their health and googles their symptoms or googles living with Celiac…and my blog pops up. I tried to put this into one post but it’s too much, so I’m breaking it up into smaller parts that I’ll publish once a week for the next 3 weeks…
If you’re bored out of your gourd with talk of autoimmune issues, I don’t blame you! Just ignore these posts, I’ll do fun stuff between the 3 Celiac posts! But like I said, I think this is important so here it goes…
A year ago when I was diagnosed, I was on my fourth doctor, all of whom had run every test you can think of…some of my symptoms were odd and not the ones you’d normally associate with Celiac, maybe that’s why none of my first 3 docs thought to test for Celiac. Don’t even get me started on WHY none of the doctors even considered doing a Celiac panel…don’t get me started because I might go off on Big Pharm and my bias against them which will inevitably lead me back to doctors in the United States who are way behind the rest of the free world in the diagnosis of Celiac Disease…really, you don’t want me on the soap box.
Whatever the reason, three doctors never considered doing a Celiac panel on me.
Here were the symptoms I listed for every doctor- (Like I said before, I’m writing this because I wish I’d known that the symptoms of Celiac Disease were so much more than tummy issues when I was searching for what was going on with my body.)
Ok…here they are, the worst of my symptoms before going gluten-free…
*terrible pain (getting worse and worse) in my left groin
*excessive tingling prickles in my feet that kept me up at night-driving me CRAZY
*aching joints, to the point of often feeling like I had a high fever
*hip pain so severe that at times I had a difficult time walking up hills or stairs
*swollen joints in my hands
*insomnia – for 5 years before my Celiac diagnosis, I never slept through the night without the help of sleep aids. I would wake and read in bed for 2 to 3 hours or sometimes just get up and do a project!
* 3/4 of my eyelashes on my left eye fell out
* sores in my mouth and peeling in my mouth that left the inside of my mouth raw, like it was burned
*nausea, like...I must be pregnant nausea- (I was so perplexed by the overwhelming nausea that I actually took a pregnancy test…I was 48 years old and took a pregnancy test!)
*excessive (even for me) anxiety
* debilitating exhaustion
And the final straw…* A 15 lb. weight loss in 3 months (without trying)
Many of the symptoms started 7 years ago and escalated with each passing year. I had all the symptoms for 3 years before I was diagnosed.
After going from doctor to doctor getting test after test one of my doctors – a male- told me to just relax and enjoy my weight loss! Finally, my daughter Bethany insisted that I go to her GI doctor at Atlanta’s Piedmont hospital.
During my first visit, Dr. Jagiella listened to me, poked around a little and started listing things she’d check in my blood work, somewhere in her list of things, she mentioned doing a Celiac panel.
I rolled my eyes.
Because no matter what…I DID NOT have Celiac Disease. My BFF Julie has Celiac Disease and if there’s one thing I didn’t want to do it was to be forced to eat like Julie.
Dr. Jagiella called me shortly after my visit to say she’d never seen blood work so “over the top-Celiac”.
A week later a biopsy (of my lower intestine) confirmed the blood work and I shuffled around for a month in a daze. But on the upside, everyone…and I do mean everyone I talked to and every blog I read, told me that I’d feel 100% better (quickly) after coming off of evil gluten.
Everyone except Dr. Jagiella.
Dr. Jagiella told me that I wouldn’t feel better for a year.
I rolled my eyes at her again and thought, what does she know, she doesn’t have Celiac Disease.
Turns out she knew a lot more than I gave her credit for…like the condition of my small intestine, which was apparently damaged.
Sorry to talk small intestines~
Okay, if you’re looking for a sunshine perspective I’ll give you one tomorrow. But today, I’m going to be honest with you, I did not feel better after going gluten free. I felt worse. Turns out my body wasn’t absorbing nutrients, I had weeks of iron infusions which helped only a little and darn if most of my symptoms stayed with me at the same intensity for 6 months.
(Three months after the Celiac Diagnosis my Rheumatologist diagnosed me with Sjorgen’s Syndrome which does in all fairness have the side effects of fatigue and joint pain…so Celiac wasn’t the only thing wreaking havoc in my body)
The take-aways here are simple…
1-Celiac Disease is an auto immune disease that causes lots of different symptoms.
2-You are in charge of your health. If you know something isn’t right with your health, don’t give up. I’m sorry, but you can’t completely trust your doctor. If you don’t get answers…keep searching.
~Thanks for hanging with me this past year my sweet friends~
It’s been 3 years now…in case you’re reading this and newly diagnosed, I want to tell you that I’ve been put on a drug called
Plaquenil is used to treat a host of autoimmune diseases and it;s helped my severe reaction to gluten. Because try as I might to avoid it, I still sometimes get glutened.
Also, Plaquenil has helped considerably with inflammation that was a big source of discomfort …
If you’ve recently been diagnosed, I’d love to talk to you more…just contact me with the email in my “about” tab at the top of the blog if you want to connect~