Sunday, 24 March 2013

My Story


On September 22, 2012…. I was diagnosed with Celiac  disease , an auto immune disease.


This is my Story………..


I remember always basing my day to day life around my stomach.
Was it going to be cramps, sudden diarrhea or just not feeling well.
Never feeling great.
I remember feeling this way in my late teens up until 6 months ago. I struggled everyday with my body and how I felt deprived from living.
It has been close to 25 years of doctors, sick days, tests, pills, sadness, weight loss, and… looking back on it today… makes me wonder how I managed to live, work multiple jobs at one time, deal with high stress of life and pay my rent. All while dealing with a stomach and body that was out of control and unpredictable.
I started questioning my doctor at my appointments… that I made OFTEN, to help with insomnia, feeling low, weight issues .  My stress levels always ending in my stomach.
The cramps, bloating, the daily diarrhea, headaches, muscle aches, lack of energy, anxiety, insomnia.  Always catching a cold or stomach flu and the list goes on …… to always ending up hearing “ you need more fiber in your diet” or “ IBS” .
I even went as far as having my gallbladder out!!
When I would leave my appointments…I was  always feeling it was something greater… and thinking “Am I crazy”? …or am I going to die?
I didn’t want to die.
But I felt ill, and betrayed by my body…
Friends, Family & Doctors… it seems don’t realize the struggle of living this way, and always feeling just "ok’. Well … just “ok”… wasn’t the way I wanted to continue my life anymore.
I was frustrated and tired of doctors not pushing or trying to get to the root of my health issues. Instead… trying me on a pill or once again, telling me I have IBS.  I seriously thought… “I am going to have a melt down.”
Sometimes, not knowing if I could make it through another day, or perhaps, even, what if I had Cancer?
This stress…again…  resulted in the cycle of diarrhea and all the nasty debilitating symptoms that come with Celiac disease..
I had my first Colonoscopy/Endoscopy back in 2004 (which I pushed and pushed my doctor for)  seemed I was “ok” ..but told I had lots of inflammation and tested negative for Celiac.
Okay…. so…. what does that mean?
I was told “Don’t stress”…  Seriously?  after a day and night of prepping for this exam… I was told “Don’t Stress”???
And what was this Celiac thing I didn’t have??
So…. maybe it was irritable bowel.  So…I continued my life, and still had and developed more illnesses. But believed what I had been told.  In my heart and gut, I  still knew something was wrong. And it had to stop, before all my teeth fell out and I got any thinner… thin enough to wear a “0″ and still have wiggle room. And yes, some people thought I didn’t eat… or girls who were insecure about their own weight, were not always kind to me.
Still we went along, trying to continue eating healthy and always looking for the “nearest washroom”…‘ or I was uncomfortable about going ANYWHERE!!  He must have thought I was crazy or dramatic, looking at me… when I would say… “my stomach is bothering me”.  I would then feel bad, which in turn, upset my stomach more.
After spending time with my brothers girlfriend who suffers from Crohn’s disease, she had told me about  her Gastroenterologist….who… “saved her life”. I got to thinking I need to see him.  NOW!!!
After going to my doctor to get the referral, and waiting an agonizing 6 months to finally meet this man… I hoped and prayed…. that he
 would say he understood… and would have all the answers.. hopefully “fiber”  is not one of them. We met… he asked me questions…  felt my stomach… and gave me a prescription for stomach pills supposed to “relax” your intestines.  And told me to come back in 3 months. He thought it WAS  IBS …going by  my previous Colonoscopy story.
During the time I was taking the pills… I had nights of upper stomach pain and more bouts of anxiety and extreme headaches.  Those pills did not help.
 I went back with my husband and he told me to get ready for another Colonoscopy/Endoscopy in 2 weeks.  I think I panicked… but I also believed in him …and in a funny way trusted him, that FINALLY he could help me.
After the procedure…  and waking up after… my husband and I were told I have Celiac disease.  I needed to have a strict “gluten free” diet, no cheating. My small intestine was severely damaged from many  years of malnourishment and illness.  I had a “gluten” allergy and in order to heal and not develop any kinds of stomach related cancers, I needed to make a huge lifestyle change. A “forever” change…. for the rest of my life.
Believe me… it is a HUGE lifestyle change.  No cheating, and no more McDonald’s Fries PERIOD!!! My doctor did tell me it wasn’t really a “bad” thing, and  if controlled by diet….  I can live a healthier life.   I had no idea how huge and complicated it can be.  I woke from many hours of sleeping at home… after my procedure… not really remembering anything the Doctor had  said to my husband….. googling Celiac to find out  exactly… what the hell it is.


So, "gluten" is anything containing gluten, wheat, barley, rye or spelt.


Well that is in everything.  Did you hear me, I said everything.


We cleared out our pantry, got rid of some pots and pans, a new toaster oven (which I have wanted for some long :) ) some new utensils and began our Celiac, gluten free journey.  But first, what is Celiac disease? Celiac disease is an autoimmune disease. Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.

So my body was starving itself and running on empty for 20 plus years!  

Everything I was eating and I was a fairly healthy eater was going right through me. Literally.

After reading all the symptoms and complications it was clear this is what I had.  The disease I went in for a Colonoscopy in 2004 that was told inflammation not Celiac?  My Gastro explained it was missed and in fact I have had it for many many years. It is a gene and can be activated at any time in someones life, after a illness, highly stressful time, pregnancy or trauma.  

Anything containing gluten, wheat, barley, rye or spelt.  Well that is in everything.  Did you hear me, I said everything.  We cleared out our pantry, got rid of some pots and pans, a new toaster oven (which I have wanted for some long :) ) some new utensils and began our Celiac, gluten free journey.  

So my body was starving itself and running on empty for 20 plus years!  Everything I was eating and I was a fairly healthy eater was going right through me.  Literally.  
Absorbing no nutrients for a healthy brain, nerve endings or absorbing vitamins my body needs to fight off illness and repair itself.  I was a walking depressed illness.                                                                          
                                                                                                  
No one seemed to have answers or advice.    What am I going to eat?  what about my shampoo and toothpaste? touching soaps, cat or dog food, breathing in flour,  if I have something that was near crumbs from anything containing gluten I can get very sick?  It was very overwhelming and I felt like I was looking for answers again about my disease.  I have finally been given the diagnosis but no way to deal with it?  Really? That kinda sucked.

Lots of learning and asking realizing how little awareness or information there is about this disease.  Crying and feeling sorry for myself and  shocked by the health care system who seems so lost about this and a world of processed food that is full of chemicals that our bodies really cannot digest and process. 


I have a lot more days of stomach pain free days then I have ever had in my life that I can remember, but still suffer time to time.  It can take years to heal your Villi and a long journey to feeling better.

The food industry is learning and at least properly labeling food to alert you of allergens, and believe me that helps so much.  All of the neurological  symptoms that happen because your body was constantly trying to fight off gluten.  Your body always fighting to keep going but unable to absorb the nutrients.  There are going to be bad days but also good days of being out without the worry of rushing to a washroom or being afraid to eat.
There is so much research and knowledge that needs to be done.



This was my journey to being diagnosed with Celiac disease…





16 comments:

  1. Im very proud of you HB xoxo

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  2. Well....Look at this Blog!!!!
    FANTASTIC!!!!
    I am so happy you finally got this on -line...
    I am going to put you in my sidebar, and I will show you how to add blogs to your sidebar...
    This is wonderful, Lissa....good job!!!

    Love
    Mom

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  3. It's been a long journey, hasn't it? My husband travelled that same path over 10 years ago when there was EVEN less known about Celiac Disease. Fortunately, everyone seems to be getting with the program and you can now find so much more in stores than you used to! Even popular restaurants have a gluten-free menu (Milestones is my husbands favourite - the American Burger). It does seem hard at first and kind of like a 'life sentence' but it gets easier over time and I truly believe that you will feel, as you get your symptoms under control, that it's not really so bad. You are forced, by circumstances to eat really, really well. No more junk food (chips are okay, YIPPEE)and no more processed crap. Isn't that how we should all eat? Good luck, Lissa!

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  4. Means a lot Devon, thank you! :)

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    1. There is a new gluten free store in Oakville. On Rebecca just east of Kerr. I think it is called, Gluten Free and Me. It has alot of stuff. You should check it out

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  5. Hi Lissa, I'm a blogging friend of your mom's. You have a really nice blog and I'm going to be reading along. I'm sorry to hear about your Celiac Disease but it sounds like you're doing well living with it. Sometimes I wonder if I also have it because some of the symptoms seem to line up with problems I've had for a long time. I look forward to learning more about your journey with it and getting to know you better. :)

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    1. Hi Jennifer, Thanks for reading my blog :) My moms is pretty nice, I know how much she ejoys it. I have learned a lot since I have been diagnosed and seems that a lot of people suffer of some kind and Doctor's well dont get me started! ;)

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  6. Hi Lissa . I follow your mums wonderful blog. I just read your story of the fight you have had and are having with Celiac Disease and can some what identify with you as I had the same symptoms years ago and was what I call skewered from both ends and they found nothing and put it down to IBS , every now and then I suffer so I watch what I eat. I now am B12 anemic body cant absorb B12 from food so I take a high dose of supplement so far so good and I also suffer from musculoskeletal arthritis, go figure ! Every day is a hit and miss but I carry on regardless ! I also had the run around with Dr's and that made it all worse ! to top it off my left foot started to swell as of last April and they cant figure it out, who knew ! Oh well one day they will get it right but in the mean time I do what I can and just keep on keeping on . I do hope you great success in your health and this wonderful blog you have started ! Thanks for sharing your story ! Have a good evening !

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    1. Hi Country Gal, Thanks for sharing your story with me. Arthritis is not fun, can be very painful. I can relate to the frustration of Doctors or never seeming to ever get an answer. Thank you for the kind words :) have a great night!

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  7. P.S do you not have a follow button ? or a linky to follow you by ?

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    1. I tried to set up something at the bottom, not sure thou. I am new to this blogging world! I will have to get some technical support on that one.

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  8. Hi Lissa, I'm another Linda like your Mom, and I've been following her blog for ages. Your Mom and I have lots in common. Celiac disease is something I've encountered via a friend's daughter. I remember the hard times they would have finding things to eat. Thankfully now I see more items that are gluten free in the stores. I do suffer with IBS and Diverticular disease but seem to have it under control with watching what I eat. Best of luck with your blog. So glad you have decided to share your problems so that others may benefit.

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    1. Thanks! I think the whole world suffers with IBS. That is such a typical answer, and I know IBS isnt much fun either.

      I will have to check out your blog!

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  9. i don't know how i missed the post lissa. but i did.
    i just read it with a sob in my throat and tears streaming.
    oh dear girl.
    i think your blog is going to be a godsend for those with celiac.
    that you had to endure the clumsiness of diagnosis and horrible testing through the years by the medical 'establishment' is sad beyond belief.
    i'm so glad you've finally found the truth and how to survive with it.
    you have a wonderful husband and best friend. thank god for him! you're not alone in your fight for health and a normal life.
    courage is sometimes only facing each day. and you have courage.
    love.
    tammy j

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    1. Awe....thanks Tammy J! I appreciate your kind words. It has been a long battle and run around. But, I am finally relieved to know what it is and that I am not crazy!

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