My Celiac Disease Journey

Nancy Olson, The Celiac Warrior Febuary 2011

Celiac Disease, have you heard of it?

 

Life before my diagnosis of Celiac Disease

My name is Nancy Olson and I live in Minnesota.  Life seemed pretty normal until 1990 the year I graduated from high school.  That summer I got very sick, and no doctor ever had pin pointed a reason.  Since the summer of 1990 I tried hard to be healthy, but had many stay at the hospital, trips to the emergency rooms, and numerous doctor appointments.  I was doing this all with a college age income, it is very hard but I tried my best. If you know how most college age students eat I was spending more money on health food items and shopping in a health food store.

In the time frame from 1990 to 1994 I had many struggles with numerous symptoms. Then in 1994 I was at my weakest point in life emotionally, physically and mentally.  At that time I was a patient at Mayo Clinic for 8 days for testing (the only testing they did was lab work in my 8 days), basically found nothing. I was told I needed to see a psychiatrist while I was at the clinic, who told me I might be bringing on ill feelings with my thoughts, I was also sent to listen a 4 hour session on how to live with IBS which is what the doctor diagnosed me with.  

The doctor suggestions were to go home and live with pain the best I can with over the counter pain meds and possibly see a psychiatrist on a regular basis.  I was living with so much pain and weakness and several other things for the next few years. Life was really becoming a challenge.

During the summer of 1994 which was at the time of my visit to Mayo Clinic I was fighting to weigh 100 pounds, constant belly pain, distended belly (my belly could distend out 2-3 pants sizes in a day, and then go back down when not eating for a period of a few hours).  I was a waitress at the time but couldn’t any longer carry a full coffee pot or more than a plate of food per hand making my job difficult.  I was losing muscle and nerve function. I was reading anything I could about health, trying to take good vitamins due what I could on basically not much of an income.

I had a major surgery in 1998 for some female discomfort that had been an ongoing thing since high school (so since at least 1990), but the doctors didn’t think that was the problem.  However, at the time the surgery did make me feel better than I was feeling in the past few years.  It made me feel better because I was having some female discomfort for a very long time but it didn’t take all the pain away. During the next almost 3 years I was eating more food, not necessarily healthy food, but it was the food that I could not keep down for the past 7 years so I was craving them and keeping them down at this point and that made my weight grow to 179 lbs.

Nancy Olson, 2005

My health was going down… though I believed it was okay.

I was considering my health to be fairly normal for the past few years, not perfect but I was doing daily things, holding a job and leading a normal life for the most part.  I can’t say that I ever felt great. It is hard to know what feeling great is to feel like when that last time you felt great was grade school.  I was still having some minor issues but refusing to see doctors at this point. 

In 2002 I just started with a couple of complaints that could no longer be avoided, body just not feeling like it should.  I started with sore muscles, back and leg pain, headaches, not sleeping, and then the loss of feeling in my legs that grow to all over the body and the list goes on.  I am not one to complain and I will put something off as long as I can even in the worst pain.  I don’t like doctors after my experiences early on so I didn’t go in unless I had to. Until the day I woke up and couldn’t get myself out of bed my back wouldn’t straighten and I had tremendous pain sitting and standing and laying down, so how are you to do anything? The issue with the back not straightening just added even more back pain and less sleep, to the point of some night getting NO sleep. 

I used a chiropractor to try to get the back issue straightened and that was a long process.  I made it back to work in a few weeks but I did stand at my job for most of the 9 hour shift just so I could get a paycheck, while still in so much pain.  It seemed when the back issues hit this time around every couple of days it seemed as if I had another complaint or symptom show up.  Personally for me I hate to complain about my health so I would work with some of the worst pain and literally would have tears in my eyes, I never slept much so that didn’t add any beauty to my looks. When you have had pain and no sleep for days on end you really don’t care much about anything else.  I had no energy, or desire to fuss with how I looked as long as I was clean that was all I cared about.  Some days I know I was nothing to look at or the person you wanted to be around as I got moody not feeling well.

Now, in late 2004 to early 2005 I started doctoring heavy as I have several complaints and couldn’t let it go any longer.  I had so much bone pain, muscle pain, migraines, almost no feeling in my legs, shaky hands, don’t sleep much more than 20 minutes every 2 hours during the night, and depression that I kept as my secret, and several more things going on with my body. 

Finally in July of 2005 I got a diagnosis, one which consists of Fibromyalgia, Celiac disease, Thyroid disease, severe malnutrition, severe anemia, high blood pressure, restless leg syndrome, and boarder line diabetic. You see I had a big bouquet of diseases!

What has happened with me since 2005 and my diagnosis of Celiac disease?

Me now:  Celiac disease is controlled by diet so going totally gluten free is what needed to be done and I did start that overnight. Yes, there were challenges but I did it! What I have learned is that malnutrition
 leads to symptoms and I needed to find good nutrition.  I am so thankful to have a diagnosis of Celiac disease, controlled by diet and nutrition.  Once my body started absorbing nutrition my symptoms started to diminish and then disappear. I am a firm believer on great nutrition no matter what the issue. Once you have the diagnosis you know of thing to watch for such a low iron, malnutrition, B vitamins deficiency and other health issues and illnesses that may have links to Celiac disease.

My passion in the past few years in health has grown tremendously which lead me to going back to school to become a Certified Holistic Health Consultant. I can better help individuals and families with a gluten free lifestyle as the change can be overwhelming to many. I have had many experience, trial and errors, read many books and resources along with many lectures.


Wishing you Abundant Health,

Nancy Olson

 

 

 

 

{ 27 comments… read them below or add one }

Mary Blackburn November 15, 2010 at 8:24 am

Oh Nancy,
I'm so sorry you had to go through all that!  I suffered from many of the same symptoms as a young mother of 2 back in 1986.  Fortunately I was a stay at home mom, so I didn't have that hurdle to overcome.  I know exactly what you mean when you say you had no strength, lost muscle, and was fighting to maintain 100 pounds.
It was my gynecologist that sent me to a gastroenterologist, and my diagnosis was within months, (from July to December), but I dropped 30 pounds in that short amount of time.
I can't believe the Mayo Clinic didn't connect the dots of your symptoms.
I'm so glad you are recovering.  It seems with Celiac Disease, the road to recovery is a lot longer than the road to misery.
Mary

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Sue Seward April 23, 2011 at 10:41 am

Nancy our story is almost identical!   Let's get together and visit soon. I sent you a private message on Facebook after reading your announcement in The Network Marketing Business Journal.  Brenda had sent me a copy after publishing one of my articles in the recent issue.

Looking forward to sharing ideas and brainstorming with you!
Sue

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Gloria August 18, 2011 at 3:01 am

Nancy
I am bad time of all this, I have gotten heavy over a few months, losing
muscles and back and leg pain, I was thin up till Jan 11, Then jumped two sizes out of my clothes, this was crazy, shoulder pain, all back pain, go for pain blocks,
No good, pay alot of money and within a week, I bend over to do clothes and I feel
90 yrs old.
Had both my knees new, I used to be able to put my knee over my head, not anymore. I use a bike and I hurt worse. I have a thyroid disease first. I have this all now and on a Celiac Diet for three yrs lost weight and kept it all off. Untill just
Jan. Of this year. Doctors love to say lose weight?? Where did the weight come from? I do not know? I am just too young to have all these problems now!!
My Iron does drop low, Doctors do not care about you, as a person!! We our on HMO. I had a blood test done, that is how I knew I was one!! A very old doctor did it, I did not know what he was talking about? I never heard the word Celiac Disease
Sorry Nancy, you went through so much, I want the doctors to us as people and
as Celiac’s, To get the word out their , like you have been doing, Nancy get in that
Mag.
Love ya,
Gloria Rightman

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Kim Garst September 7, 2011 at 9:39 am

Wow, you are a warrior, girl! Love your site!

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admin September 7, 2011 at 10:30 am

Thanks Kim!

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jbmthinks/sportsparenting September 7, 2011 at 10:13 am

Wow. you have had quite a rough journey. So glad you are now able to help others who are suffering.

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admin September 7, 2011 at 10:29 am

Thank you so much! Yes the passion is to help other now!

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Liz September 7, 2011 at 10:42 am

I’m so glad that you found out what was up sweetie!!! I had a 10 year struggle with a problem what was finally cleared up for me. You are a very brave young woman!!!

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Alexandra McAllister September 7, 2011 at 11:06 am

WOW! What an amazing and strong woman you are Nancy! You’ve made it through all of this and now helping others! Great article! God bless you.

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Solvita September 7, 2011 at 11:47 am

Thanks for sharing your story! I’m sure there will be many people who will feel that they are not on their own. People need help and you are there!

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Dr. Daisy Sutherland September 7, 2011 at 12:57 pm

I love the fact that you would not give up until you got the answers…love it!! You are a true fighter and a winner!!:)

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Lisa Birnesser September 7, 2011 at 1:44 pm

What an amazing journey. I actually have friends that suffer from Celiac Disease and will send them to your site. Thanks for sharing.

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admin September 7, 2011 at 1:56 pm

Lisa, thanks so much! I am working on some great Celiac / Gluten Free so please share!

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Marie September 7, 2011 at 7:10 pm

I cannot imagine living undiagnosed with Celiac for so long. While I am blessed with good health, I have many Celiac friends, so I have learned much from them and about health, good nutrition and being gluten free.

You are one incredible woman.

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admin September 9, 2011 at 2:04 pm

Thank you Marie, I had the will power to keep fighting. All the doctors wanted to do was diagnosis it with an illness that they dont understand where it comes from and cover it up will a pill, and that made me keep looking. I think it is great for everyone to know a bit about gluten free and Celiac disease.

Thanks for stopping by!

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Elise Adams @AdamsOrganizing September 7, 2011 at 9:41 pm

Thank you so much for sharing your story! What a journey!!! I know several friends have struggled with diagnosis like these and I myself has battle fibromyalgia for years. It’s so wonderful to feel like we can live healthier by putting better nutrition into our bodies!!! I’ll be stopping back by often :-)

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admin September 9, 2011 at 2:07 pm

Elise thanks for stopping by my page! Yes I know all about fibromyalgia as that was one of my fist diagnosis prior to Celiac disease, I do not have many issues with it any longer thankfully. I hope to see you back here!

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Deborah Turton September 8, 2011 at 5:15 pm

Wow!! What a journey and I celebrate with you on not only overcoming, but also caring enough to help others. Thank you for creating awareness and answers!!

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admin September 9, 2011 at 2:27 pm

Thank you Deborah! I appreciate you stopping by!

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GlutenFreeFind.com November 26, 2011 at 12:25 pm

Nancy,
Your story is so inspiring and congratulations to you for being a wealth of knowledge, support and guidance for those with celiac disease, and those living a gluten-free lifestyle! We wish you all the success in the world.
-GlutenFreeFind.com

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Carl Mason-Liebenberg January 7, 2012 at 12:46 am

Nancy…I so love your story. though a painful experience, no doubt, what a powerful testimony and now truly a ministry to others who are experiencing the same. You are amazing and I know a blessing, inspiration and beacon of hope to so many around the world through your journey!

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Nadya January 17, 2012 at 9:02 pm

Great job of telling your oh, too familiar story!
My daughter is your age, and after her BFF went gluten-free due to infertility, she began to see the connection between gluten and several health issues our family had! (Migraines, skin: DH, anxiety mild seizure disorder, dyslexia ….) So my daughter had the genetic testing done, and when results came back w/ 2 genes for intolerance (her & her 2 daughters), I went GF, too!
My results are more subtle, but more energy, less *brain fog,* no more itchy scalp, fewer aches n pains ….we also Strive to Thrive, and to spread the word!
I work in a health clinic, & the LAc & another massage therapist & I have a mini GF support group going on! Our local GIG (Gluten Free Friends) is starting a kids’group next month, to help them stay on track as peer pressure sets in!
keep up the good work!

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Nancy Olson January 18, 2012 at 10:55 am

Nadya, great to hear from you and part of your story! It real is amazing how each person has such different reactions to foods. Thanks for sharing!

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Elizabeth Carr April 25, 2012 at 12:57 pm

Wow you are truly an amazing inspiration. Thanks for sharing your journey. Coming from TheBlogFrog

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Nancy Olson April 29, 2012 at 8:23 pm

Thanks so much for stopping by Elizabeth!

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Lisa August 5, 2012 at 12:28 pm

My story aligns with yours. I was on the executive track at a major aerospace company. Newly married, 2 babies, college classes, hours and hours of work, and too sick to even breathe. We took our son to Disneyland for his first time. I kept quiet about how bad I felt. I honestly thought I was going to die that night because my diaphragm was too weak for me to breathe normally. I had low potassium, calcium, iron, etc. In a wheelchair the whole trip. I was going to see my baby boy see Mickey for the first time, even if it (literally) killed me. Once diagnosed, I never looked back. Gluten is only an afterthought. During one of my NUMEROUS hospitalizations on the “GI Floor” I was watching the doctors and nurses. I thought, “I can do that”. Checked out of the hospital, quit my job, and went back for yet 2 more degrees (like I needed any more). I am now a Nurse Practitioner with Celiac that treats Celiacs. If the docs don’t know, they call me. They treat me well. I am out here not only fighting the fight as a person diagnosed, but I am also fighting for those yet to be diagnosed. Glad you have this sight. Well done!

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Nancy Olson August 6, 2012 at 6:55 am

Lisa thanks for sharing your story as well. Yes, having such a disease makes a passion grow for me. My passion grew as in my area I couldn’t find the support I needed and so I started with giving support to other like me and it just grew. I also have gone back to school, I am becoming a Certified Health Nutritionist. Best of luck to you!

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