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Sasami888

Member Since 08 Jan 2013
Offline Last Active Jan 10 2013 09:57 PM
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Topics I've Started

Misdiagnosed And Had Celiac All Along? Hi!

08 January 2013 - 05:51 PM

Hello everyone! I am a new member, but have been lurking for a few days. I received my diagnosis about a week ago between Christmas and New Years. I am both relieved and anxious about the diagnosis. Happy to know what is making me sick, but it is a lot to take in! SO MANY QUESTIONS!!! Well, seems like I found the right place to ask those questions. ^_^

To skip my personal story about being repetitively misdiagnosed before receiving a proper diagnosis, scroll to the end of my story for the questions. I just wanted to share my experience.

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So, here is where I want to begin. Here is my story, questions attached:

In my experience, I have been sick since I was a small child.

I became anorexic at age 8, not for vanity, but because I simply felt better when I didn't eat. Then I became more sick and was diagnosed with hypothyroid disease.

I started eating 'normal' again while taking synthetic thyroid hormones and then my weight ballooned into my early teens. Then my same doctor that diagnosed me with hypothyroid disease took me off the synthetic thyroid medications when blood work returned with results showing that I no longer had hypothyroid disease.... weeiiiird.

Then it happened again off and on, not two, not three, but four times throughout highschool. Thyroid problems came and went. I then developed cystic nodules all over my body and was put through more than one round of accutane.

The cysts would disappear after 8 or so months on accutane, I would come off the accutane, be clear for a week or two, then... BLAM! Covered in cysts again!

Little did I know, hypothyroidism and cysts were symptoms... it gets a little more weird.

So, into my college years, I had a body full of scars, cysts, thyroid problems, SEVERE fatigue, inability to focus, and sudden complications with my kidneys. It soon became normal to be in pain, not remember anything/fuzzy memory, and have blood in my urine. (my grades dropped at this time - straight A's to D's and a few F's :( Parents were angry and didn't listen when I gave them my reasoning.. I felt like shitaki mushroom).

Doctors put me on kidney medications and then accutane.

I became anorexic again. The symptoms cleared and I felt good again... for a few months (I wasn't eating after all). I mean, my skin was clear... not a single cyst OR pimple! I could breathe better AND I had energy. I was even making straight A's again!!!

Then it occured to me that I may have food allergies.

So I saw an allergist and was then diagnosed with food allergies: dairy, wheat, ginger, and sweet potato. (And THEN my mom decided to tell me that she was hospitalized while pregnant with me for consuming dairy!) angry face, fist shake.

I began eating well. The pain would sometimes happen and the cysts returned... but they no longer covered my entire body. I would have maybe eight cysts on my back and 5 or 6 on my face at a time. I wasn't complaining... it was the best I had felt in years. Even if I did have a few off days! My parents still believe my drop in grades having nother to do with my health... :( I'm serious... I study hard and never party...blah blah blah. I'll save THAT (parental reaction and grades) for another topic.

Then I had a few episodes... so severe... I ended up in the ER several times this past semester. (grades: managed to do okay, but nothing spectacular). The doctors told me that I not only had debri in my kidneys, but I may be developing more severe problems as well.... possibly might develop kidney disease. I was placed at high risk. :( :( :(

I got to where I started drinking a gallon of water a day, no tea, no soda, no coffee, etc.

I felt better as a result but still had severe pain. I would have a hard time walking between classes and even doubled over on the sidewalk a few times because it felt as though someone had shoved a few knives into my gut and they were twisting them in many different directions at once.

I saw the school doctor and disability office and they e-mailed my teachers as a result. I was allowed a few extra minutes to get to my classes. Which, believe me, I needed! There is a strict attendence policy at my university where 3 tardies/lates = 1 absence and 3 absences = 1 drop in a letter grade. Sometimes I would be on time, sometimes 5 minutes late, every time in pain. I just couldn't live like this anymore!

So I went to the same doctor I had been seeing as a child over the break. She told me that she was going to have two separate blood tests done and not to eat for 24 hours before my appointment.
I followed orders and came in. She drew blood, labeled it, and then handed me some rye bread to eat. An hour later, she drew more blood.

Two weeks later, I came in to hear that I had low amounts of IgA and IgG antibodies in the first blood test, but in the second blood test... the amounts were HIGH.

So, after a few more tests, the results are in. I have celiac disease. I am so RELIEVED. After a LIFETIME of health complications, I have an answer. I know I have only been gluten free for a few days (I am avoiding my allergens too), but I am looking forward to becoming healthy and having energy again!

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Here is my question for you guys!

Before being diagnosed with celiac disease, were you diagnosed and treated for other things that were actually related to/tied to celiac disease?

If so, what was your misdiagnosis?

How did you feel to finally know that you had celiac disease?