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Always feeling exhausted and ill? Do you have an auto-immune disease like me. Here's my story about how I discovered it and how I learned to live with it.

How I Discovered My Auto-Immune Disease

Always feeling exhausted and ill? Do you have an auto-immune disease like me. Here's my story about how I discovered it and how I learned to live with it.

Today I have a guest post written by my oldest friend April Berry. She has been recently told that her doctor believes she has Celiacs Disease and she wrote about what made her question her health, how she has come to terms with it and how her new diagnosis has changed her life.

Without, further ado let’s turn it over to April.

How I discovered my Auto-Immune Disease

What is this next bite going to do to me? I’m so hungry but I’m afraid to eat. Will I be able to read product labels when I travel? Have you ever had to ask yourself these questions? Then maybe you have a food allergy or illness like me.

I was never one to pay attention to my weight or the food I eat because I was relatively happy with my body. Sure, I had fat days, who doesn’t, but then I would remember my love of food and my hate of exercise and I would get on with my day. All in all, I was pretty lucky because I could eat what I wanted without the stress of dieting or fitting into a new dress.

Then I started to notice some changes, first came the weight. My jeans got looser in my butt and thighs, my bras seemed bigger and were no longer accomplishing their main task of keeping everything in place, things were just flopping around, it was like a 3 ring circus. Not to mention the constant barrage of comments from family and friends about “You look like you have lost so much weight…have you been working out?”. I know all of these were said with good intentions but at some point you start to question how damn heavy you were before to make this such a hot topic. So I stepped on the scale that I never use and realized I had dropped about 10-15lbs.

Now most of you are starting to hate me right now…”This witch with a b….” But let me explain, it didn’t feel like healthy weight loss and I knew something was wrong because nothing in my life was changing, not my diet and certainly not my distaste for exercising. So why was this weight falling off?

The weight was not my only symptom just the only external one, on-top of that I never felt good, felt sick to my stomach, I was exhausted all the time and would sometimes have to nap after work. I had very low energy, anxious feelings and was/still am ALWAYS COLD. And I don’t mean just throw a blanket on my toes cold. I’m talking sweater, 2 blankets hot water bottle just to be comfortable kind of cold.

Web MD finally got the best of me and I decided to make an appointment with my family doctor, I needed some answers. I was convinced going into his office that I had a thyroid issue. It fit all of my symptoms and thyroid problems run in my family.

He reviewed all my symptoms, asked some questions and I of course gave him my expert knowledge of Web MD. He asked if I ever considered that it could be a gluten intolerance? I said no-way because I eat “gluten” at every meal and I don’t feel sick after every meal, some days were worse than others and I didn’t see any correlation with the amount of gluten I ate that day. He discussed my options and wrote a requisition to get some blood tests, but since the TTG tests costs $60 in Ontario he said it was my choice whether I do that one or not. I was positive that wasn’t it, and I didn’t want to pay that if I didn’t need to so I said no. As usual, my stubbornness got the best of me.

My doctor, bless his heart, called me personally with my results two days after the test. They came back mostly clear with a few abnormalities that could be caused by anything, but definitely not a thyroid issue. After inconclusive results he wanted to order more tests and again he asked about the gluten test but was more insistent this time so I caved, what is $60 when it comes to my health right? If nothing else it would help him move on from this idea. Again, I get a call a few days later but this time it’s his receptionist, and I quote “ The Doctor would like to see you, when can you come in?”…. can you hear the dun…dun…dun music? I guess It was a good thing, this is what I wanted all along, an answer and a reason for my issues but now it seemed so real that maybe there is actually something wrong with me.

There was a pit in my stomach the next week as I wait for my appointment and sure enough the Doctor was right… he believed I had Celiac Disease. Turns out I lost the weight because even though I was eating I was not absorbing any of the nutrients in my food which was in turn making me tired and cold because I have no fuel to operate my body. At this point I had lost about 20 lbs in the span of 4 or 5 months which on my normally 145lb body was quite the change. If I would had kept going that way I could have become seriously malnourished.

Again the doctor reviewed my options of which I had two. Get on a waiting list to see a Gastroenterologist where they will do an upper endoscopy to further prove the diagnosis, but the catch is you have to be eating Gluten to get an accurate result. Option #2 was start eating gluten free and see if I feel better. Now all hail Canada’s free healthcare, I wouldn’t give it up for the world… however it’s not without its flaws. One of them being extremely long wait times to see specialists. So with a possible light at the end of the tunnel my doctor and I agreed that my best course of action was a gluten free diet.

I went home and cried to my boyfriend who was more supportive then I could have ever hoped for. We had plans to go to his families the next day and he called and told them I wouldn’t be eating gluten anymore and to please keep that in mind when making dinner.  We went through our cupboard and looked at what I could and could not eat anymore. Within weeks of this new “diet” I started to feel better, my weight stabilized, I didn’t feel sick to my stomach all the time and I seemed to have a bit more energy.

The Canadian Celiac Association says you don’t have a confirmed diagnosis of Celiac Disease until you do an upper endoscopy and that a blood test alone is not conclusive. And for a while I felt that I couldn’t say it, I was in denial and I felt guilty calling it Celiac I would just say I’m “Gluten Free”. I noticed that it made people not take me seriously because it’s a “Fad diet”. But after I started to feel better I came to the realization that I need to own it, my doctor called it that and really the proof is in the pudding, or the bread if you will. I have this disease and I will do whatever it takes to make myself feel better.

Celiac disease is a serious long term auto-immune disorder, but it’s treatable, I know what I have to do and I am on my way to feeling better. I no longer call it a “diet”, it’s a lifestyle change, one that has drastically affected my family and friends and will for the rest of my life. Lucky for me I have an extremely supportive network around me of family and friends who make it easier and are there with me every step of the way. That’s not to say it isn’t difficult. There is gluten in everything and I always have to be reading labels and be very careful at restaurants and I will still have unforeseen setbacks but I am getting better.

It has been about 4 months now and I am learning more everyday. I still get sick occasionally and it takes a while to get my system back on track but I am determined to not let this affect the quality of life I want to have.

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