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My Story (Gettng Diagnosed with Celiac Disease)

Everyone has their own story about how they were diagnosed.  The lucky ones ‘found out’ early in life and could make the changes to their lives without too many problems. I had gone about this discovery in a convoluted sort of way with only a few hiccups.

I was around 20 years old and living at home still (I’m a late bloomer, I know). One day I decided not to go to work. I just wasn’t feeling well, nothing serious but I was not about to go and work another day at my crummy job. My work, of course, asked for a doctor’s note. This insignificant request actually changed my life…so thank you crummy job for starting my path to a healthier me!  I went to a walk-in clinic close to my house and the doctor on duty had a look at my hands, gums and eyes and said that I needed to get my iron checked. This was strange to me as I came in for a note and not a series of tests.  Well surprise, surprise...I was severely iron deficient and anemic due to the deficiency. This also explains my random fainting, fatigue and irritability.

I started months of iron pills, one per day for two months, two per day for two more months and four per day for yet again two more months. My Iron levels weren’t increasing (I had black, tar smelling poo, this is weird). Not knowing why this was happening, I started to jump from specialist to specialist until I finally saw a GI doctor. She took one look at me and said, "You have celiac disease. Now it could be [this, this or this] but I think it's celiac disease."

When I went for my biopsies I was nervous and hungry and the drugs didn’t keep me knocked out for the entire procedure. Luckily I fell back into a drug induced coma for a few more hours. The results were textbook my doctor said. My blood work came back negative for celiac disease but the biopsies were clearly of a person with this disorder. I have celiac disease. I am a celiac. I have to attempt to wrap my newly adult brain around this fact and that the stuff I have been eating my entire life, stuff I love. is so harmful. I think one of the reasons I struggled with this is that I believed that it just popped up. At the time I didn’t believe that I was born with this.  

The first two or three months I was as diligent as a newbie can be. Then I had a bad day. I was at work and for some reason feeling bad for myself. I didn’t have a lunch prepared. For people newly living gluten-free in 2001 it was bad.  People didn’t understand the allergy (2003 the height of the Atkins diet) and I didn’t truly understand the consequences of eating gluten. I went to a sub place and got me a pizza sub with triple cheese. That’s right triple cheese. Don’t look at me like that, I’ll pay the extra. I want that damn cheese. It was so good!!!!! Soft and warm! At the end of my shift, about 3 hours later, I was in the cash office with a good friend of mine and I was so weak that I couldn’t pick up the dimes to count them. I looked over to my friend and said "Dar I don’t feel good."

I will never forget the look on her face. I apparently looked translucent. I’m a pale kid, Irish/English decent; there isn’t much hope for a tan on me. Darlene made sure I got the heck out of there because of how bad I seemed to get so fast. I spent the next 3 days in violent pain. I can say to you now that I have felt the depth of my intestines. How cool is that? How many people know that feeling? Maybe a few but no one I know. Those three days sucked and I never questioned this ‘no wheat’ thing ever again! I have been gluten free for 12 years. There is always more to learn and read about. There are always new celiacs to help and discover how easy and good gluten free food can be!

I love to bake and I cook a lot at home. I am lucky in that I have lived with people that cared enough about me to keep an open mind…and not call it cat food.

As always, Celiac.com welcomes your comments (see below).


Spread The Word



8 Responses:

 
Kim

said this on
13 Aug 2013 6:01:39 PM PST
I'm right there witcha, girl!

 
Vanessa Oakley
( Author)
said this on
14 Aug 2013 2:24:30 PM PST
Thanks Kim! We gotta stick together.

 
Dottie

said this on
16 Aug 2013 4:17:10 PM PST
Beautiful story! It is for you to get diagnosed early. I'm 64 and just now finding out that I have celiac disease. Hang in there!

 
linda

said this on
21 Aug 2013 5:17:27 PM PST
I too have just been diagnosed in April and am 64, now I have been told that I also have lyme disease? I have only had one test for this. Does anyone know if they are common together because both are autoimmune?

 
Debbie

said this on
25 Aug 2013 5:55:40 AM PST
I'm 63 and was just diagnosed in April. So much to learn!!!
I love to bake for my grandchildren and am trying new recipes.
My daughter has spells of passing out and doesn't sleep well at nights. I wonder if she should be tested?

 
Vanessa Oakley
( Author)
said this on
03 Sep 2013 12:53:39 PM PST
Debbie it wouldn't hurt anyone if she was tested. celiac disease is hereditary.

 
Vanessa Oakley

said this on
20 Aug 2013 9:50:34 AM PST
Wow, thanks Dottie! It is so important to get diagnosed and to make the change as soon as we can. I wish you luck on your new journey and I am always here if you need someone to chat with!

 
Dawn

said this on
26 Aug 2013 5:21:48 PM PST
My daughter has celiacs she is 9 we found out when she was 7.




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