Part 2: The first year after diagnosis

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There was so much to cover over the past three years, I naively thought I could fit it all into one blog post. I will have to make this a three part story. I did my best to stick to the important information and the other details I will cover in posts to follow. The following is my life one year after diagnosis.

I will say this over and over again, time flies. I cannot believe it has been three years since I have been diagnosed with celiac disease. In that three years, I have been on a huge roller coaster ride of emotions, different levels of motivation, and physical symptoms. This disease does not just affect us physically; personally, I think it hit me harder emotionally.

I have spent three years dissecting, stitching up and then re-dissecting myself. In that time, I have read and researched about celiac disease for hours on end. What are the symptoms and is it normal to be experiencing what I am? How many people have it? Is there a cure? How long do the symptoms last? If I eat gluten, how long until I feel normal again? How can you become cross contaminated? Why is my hair falling out? What is happening with my hormones? Why do I have a rash on my skin years after being gluten free? Why can’t I get out of bed? Where has my motivation gone?

I have done what we all do and went down the worm hole of Dr. Google, time and time again. This, my friends, is why I have started a blog. I have done all the research for you, and I am ready to share my story with the world. Mostly because, it has been three years of being gluten free, and I still have symptoms. I’m tired of being sick and people not fully understanding the specific details of celiac disease.

Three years ago after I was diagnosed…

I left that doctors office feeling relieved, with a pep with my step; finally a reason as to why I was not feeling well for the last six months. However, once I started researching, I realized it was not just a reason for the last six months, but explained what I thought were normal symptoms in my life up until now.

I remember siting back and thinking, where do I start? 

So, I started by cleaning out my cupboards of everything that had gluten, cleaned every inch of the kitchen, and headed to the grocery store. I went from shopping for 20 minutes to 2 hours because I was reading every label so closely and could not believe that gluten was literally in EVERYTHING. It took some time but I have now found a groove in the grocery stores and I am back to shopping in under 30 minutes.

Photo from this link: https://holistickenko.com/small-intestinal-sibo/

About 6-7 months after diagnosis, I felt somewhat better but still had symptoms, so I decided to go see a naturopath. He decided to do a SIBO (small intestinal bacterial overgrowth) test on me where I had to fast the night before and drink a liquid the next morning before I started the test. I had to then breathe into multiple test tubes every 10-20 minutes for about 2-3 hours. We discovered that I was high in both hydrogen and methane gas values which meant there was a bacterial overgrowth present in the small intestine. This means that bacteria which normally grows in other parts of the gut, like the large intestine, start growing in the small intestine. This will then cause pain and diarrhea and it can also lead to malnutrition as the bacteria start to use up the body’s nutrients. Therefore, I was then placed on a really expensive prescription drug and a SIBO tincture that he gave me. 

I emailed my naturopath to find out exactly what we did and this is what he responded: “We started with the SIBO tincture which is a combination of hyrastis, commiphora, and thyme.  We did that for four weeks followed by restoran 0.5 mg which is a prokinetic, meaning it keeps your bowels moving in the right direction to prevent recurrence.  There are prescription options (rifaximin and neomycin) which I will sometimes used when merited, but I don’t believe we did that with you.”  

I remember feeling better after this treatment, so we started the next step which was a hypoallergenic diet. For three weeks I had to cut out processed sugar – some fruits were okay, grains, dairy, soy, peanuts, meats such as pork, beef and some fish, alcohol, sodas, coffee and tea (except herbal), some condiments and all processed foods. I was able to eat some fruits, vegetables, some meats and fish, all nuts and seeds except peanuts, potatoes, sweet potatoes and squashes, beans and legumes, milk substitutes (almond milk, etc.), and some oils and spices. Along with the diet, I was taking two supplement powders, one which was for gut healing (RestorX) and the other which was packed full of nutrients (Bioclear).

This was SO DIFFICULT. I remember the first week basically going through what I imagined was withdrawal symptoms. I had headaches, rashes, brain fog, hunger, emotions, and cravings – all of the cravings. However, once I got through the first seven days, I kid you not, I felt amazing.  I have never in my life felt as good as I did then, and I thought to myself…this is what it feels like to be normal. So, I continued with the diet for another few weeks longer then I needed to. I had more energy, I could think straight, bowel movements were regular and normal, rashes were gone, no anxiety or emotional upset, my hair was growing back, I was sleeping better, no muscle or joint pain (this helped me perform better at the gym); I felt like a super hero. 

It was not until I started eating dairy, processed foods and grains again that symptoms returned, even though I was gluten free. I remember eating a piece of cheese for the first time after cutting it out for a month and having sharp pains in my gut from it. I have never had trouble with it before. Just like the time I came home from Costa Rica, two weeks of eating fresh and unprocessed foods, and eating gluten free bread again and instantly having sharp pains in my gut. At the time, I did not think much of it, but about 2 years later, I then started to research why this would be. 

Photo from this link: https://bakeryonmain.com/f-d-a-sets-new-standards-for-gluten-free-food-labels/

Fun facts: I now know that some naturally gluten free grains and products that are labeled gluten free (without being certified gluten free) may contain gluten depending where they are processed. Also, the Canadian government, the FDA and other governments around the world, allows 20 parts per million or less of gluten in “gluten free products” because research says that this is apparently safe for celiacs. Personally, I am still not convinced of this. This means that products can be made with gluten, but processed to have the gluten removed…think about this, some products are made with gluten and then processed in a way to have the gluten ‘removed’, which means it could technically still contain gluten of 20 parts per million or less.

No wonder three years later I still do not feel great and my tTG blood levels are still high. This subject alone is going to be one of my blog posts in the future, as I feel this criteria needs to change. It even says on the FDA website, “This level is the lowest that can be reliably detected in foods using scientifically validated analytical methods. Other countries and international bodies use these same criteria, as most people with celiac disease can tolerate foods with very small amounts of gluten.” This means that not all celiacs can take this small amount of gluten in their systems.

Australia and New Zealand have the toughest labeling laws in the world, stating that absolutely no detectable gluten can be found in any gluten free products. Since setting this standard, there has been an increase in improved health across the two countries. I plan to write a blog post about this subject in more detail later on. More information on the FDA guidelines can be found here, https://www.fda.gov/food/nutrition-education-resources-materials/gluten-and-food-labeling.

Three months after diagnosis in Costa Rica, I can hardly recognize myself in this photo to what I look like now. My body was healing here, but I felt so much better.

Through trial and error you do start to learn what to do and what not to do, what to look out for and what to avoid. As an example, three months after my diagnosis I went to Costa Rica and while I was there I definitely ate gluten by something as simple as eating the peanut butter that had knives dipped in it after it was spread on toast and then placed back in the peanut butter. I then spread that same peanut butter onto my banana. I was instantly bloated and uncomfortable. Another example was taking a bit of a curry from a friends plate, which had naan bread dipped in it; this made me sick and uncomfortable for a week or two following this. Specific details as small as they may seem, you will learn very quickly.

Next week will be part three of my story; what happened when I accidentally ate gluten again, my biopsy experience and what I will be doing now over the next year to heal my gut.

Please always keep in mind that what I write about is my own personal experience. What I experience may be different from what you will experience. There was no partnership with any products mentioned, they worked for me and may or may not work for you. As always, consult with your healthcare practitioner before starting anything new.

With love, be kind to yourself,

LEW xxx

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Part 1: The beginning of a positive lifestyle change

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“I was assigned this mountain to show others it can be moved.”

This is a progression of photos of me over the years. 2013: I was 24 in this photo and just a few months away from graduating from a very intense program at school, probably around 120-130lbs, pale, blackened eyes, stressed and thin hair. 2016: 27 years old, 155lbs and 3 months into what I did not know was an autoimmune response in my body. 2018: exactly one year after diagnosis, healthy and looking better then I have in years and feeling fantastic.

Just over two years ago, at the age of 27, I was diagnosed with Celiac Disease through a blood test. Six months before that I became extremely ill after a trauma from an accidental hit to the face with a hockey stick. Don’t get me wrong, now that I know about this, I realize I actually have had symptoms my whole life but just thought of them as my “normal.” 

Growing up I remember having frequent ear infection after ear infection and I do remember a lot of arguments over taking this artificial banana tasting medicine, which really wasn’t the best. As a fun fact, I have now been informed that repetitive ear infections in a kid can be a sign of a food allergy or intolerance. Now keep in mind, it is not always associated with food allergies and can be due to a virus or bacteria and can be a serious medical condition that needs to be looked at right away as it can lead to hearing loss or the infection spreading.

Along with ear infections, I had knee pain and other joint pain, seemed to get the stomach flu quite a bit, when I was 17 I had my first go at gastritis (which I now realize this may have been an autoimmune flare up because I also had another trauma; to my knee this time; and it occurred around the first time I had gastritis) and again another time 5 years later in the Dominican Republic (May 2012). I could never seem to get my iron up no matter how much red meat and iron supplements I took (this was before I realized you could get iron from vegetables and fruit as well) and I was always anemic (I now realize this was most likely due to malabsorption in my small intestine). 

Want to know something super ironic? I worked in a bakery for 7 years, yup, a full on gluten infested, flour in the air, bakery. This is when I really started getting symptoms; shocking, I know. 

This is my hand recently with Dermatitis Herpetiformis.

Symptoms such as: shortness of breath, anxiety, menstrual problems (infrequent, heavy, light, painful, PMS, etc), clustered blistering bubbles all over my hands (Dermatitis herpetiformis), hair falling out, nails always breaking and nail beds always peeling, painful acne spots on my face and buttocks, red bumps on my upper arms, mouth ulcers, stomach sickness, difficulty concentrating and I was ALWAYS hungry; I literally could out eat all of my friends in school. It was very difficult for me to gain any weight, I remember my family doctor telling me I needed to be around 140lbs for my height and I was always around 115-120lbs (I’m not complaining and I was really active but it was just weird eating as much as I did and not gaining any weight). My hair dresser always pointed out to me that I was loosing a lot of hair at my appointments and mentioned a handful of times that I had psoriasis on my scalp. I do remember having flaky chunks of skin come off my scalp in my finger nails when I would scratch my head.

Jan 2017, just a few days after diagnosis (super inflamed gut), to Feb 2017, just one month after. The difference after one month of being gluten free was huge. Also, take note of how messy my room was, this just goes to show how awful my mental state was at the time. I had no motivation and just did not care.

Before the trauma occurred, I was sluggish, gaining weight (I was around 150-155lbs, which could have been muscle), unmotivated, bloated, my hair was thin, and I was tired. After the hockey stick trauma in 2016, I did not know what was going on with me, I became very mentally and physically ill. It started with really low energy which I thought was from lack of sleep because my sleep pattern went from sleeping well to falling asleep fine but waking up all night. I had maybe 2-3 hours of sleep a night, which resulted in me nodding off in the middle of the day. Concentration and thinking was a struggle, my brain was in a fog all day and everyday. I started to experience becoming sick with the common cold at least once a month, which turned into a sinus infection which I was put on one dose of antibiotics for and soon after got my first ever yeast infection. PMS was HORRIBLE, I had headaches that later turned into migraines, cramps, bloating, and nausea. I had the Dermatitis herpetiformis (DH) rash on my hands blistered and cracked open with sores all over my fingers. I had a mental hit as I was depressed and mentally fatigued, quite literally crying 2-5 times a day over what seemed like nothing.

The last month before I finally went to get help (6 months after the trauma), I had migraines which I have never had before in my life, really sharp pains in my gut, and what got me going to see a doctor was my mouth bleeding every time I brushed my teeth and huge bleeding oral cankers as I know this can be a sign of malnutrition.

The stubborn human I am, it took me 6 months of being sick to finally consult a doctor. The first doctor I saw told me to go back on birth control…yup. Talk about negligence, keeping in mind he was a walk in doctor that was extremely tired but that is absolutely no excuse. Knowing what I do now, he let me walk out of his office after less then 5 minutes of talking, close to being hospitalized. Thankfully I knew better and threw out the prescription paper as I was leaving the office and the next day I went to another walk in and met the incredible doctor that I now proudly call my family doctor. She spent what felt like 30-40 minutes with me and listened to my entire story and all of my symptoms for the last 6 months. Palpated my abdomen and sent me on my way for a blood test looking into multiple conditions.

Fifteen minutes after this appointment (about 3pm), I was in another building having my blood taken. This is when I really knew something was wrong as they were having trouble finding my veins and getting blood from them. The nurses had to go to both arms to try and get enough blood for the tests.

9am sharp the next morning, when the walk in clinic opened, I received a phone call telling me my blood results have come back and I needed to go in to speak to a doctor immediately. This of course, got my heart racing. Getting my blood results back this quickly had me thinking I had a serious health condition. The doctor sat down and told me I had Celiac Disease and I was extremely anemic. To test for celiac disease they test for a tTG result in the blood (IgA antibody level) and this level should be less then 12. Mine was over 300, and the iron/ferritin level was 3.4 when it should be between 40-200. 

I left that doctors office surprisingly relieved and felt as though the bag of bricks I was carrying around had been lifted off my shoulders. I went home and immediately spent hours researching celiac disease and the more I read, the more my life made sense.

If you are in a position of not feeling well, or knowing something is just not right, do not give up – your answer is around the corner.

Next week will be Part 2 of my story, three years after diagnosis.

With love, be kind to yourself,

LEW xxx

3 months after diagnosis on a trip in Costa Rica. Pure bliss. My mind has not been this clear in years.

Please Keep This Disclaimer in Mind:

This article is for educational purposes only and is not intended to diagnose, treat, cure or prevent diseases. We cannot provide medical advice or specific advice on products related to treatments of a disease or illness. You must consult with your professional health care provider before starting any diet changes, exercise or supplementation program, and before taking, varying the dosage of or ceasing to take any medication.

Who am I?

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“Be yourself, everyone else is already taken.” – Oscar Wilde

Hi Friends!

As I mentioned in my About section, my name is Lauren and my nickname is LEW (this stands for the initials of my full name).

It seems like everyone and their cat is starting a blog or a vlog, and to be honest, for many years I was afraid to do this. Thinking to myself that I did not have anything worth writing about or no one will ever want to read about my life. However, I know realize that this is nonsense! Everyone is their own important and amazing soul and everyone has a worthwhile story to share.

Truthfully, I want to start writing a blog to bring more awareness to two passions in my life, which are: Athletic Therapy and Celiac Disease.

Firstly, I work as a Certified Athletic Therapist in Canada and we are often confused with Physiotherapy. Both careers being as amazing as they are, there are slight differences and I will be discussing about this in my blog along with writing about conditions, exercises, stretches, mobility, prevention and so much more.

Secondly, I have known I am Celiac for almost 3 years now, and I cannot believe the kind of mixed messages and untruthful information out there about this disease. With the rise of a gluten free trends and lifestyles, there is no wonder why people confused someone with celiac disease with someone who is non-celiac gluten sensitive or another human who has decided to eat gluten free because they feel better. 

“In a study released in 2016, Hyun-seok Kim, MD, a doctor at Rutgers New Jersey Medical School in Newark looked at a national survey taken from 2009 to 2014. Only 1% of the population has celiac disease, and this number has not changed in recent years. Although celiac disease numbers remained stable during that time, the number of people following a gluten-free diet tripled, from 0.5% of the population to nearly 2%. This was bringing in an estimated $4 billion dollars of sales on gluten free products in 2015.” (WebMD, 2016)

Those numbers are HUGE, and thinking that it is now the year 2019, I could only imagine how much larger those numbers are.

My goal is to connect with everyone interested in either of these topics and if I end up helping just one soul in my journey into blogging and sharing about my life experiences, that would mean the world to me.

Please follow along or share the information I am providing if you know of anyone it will help. Subscribe to get notified when I post new updates.

WebMD 2016 Reference: https://www.webmd.com/digestive-disorders/celiac-disease/news/20160916/whats-behind-gluten-free-trend#1

Please Keep This Disclaimer in Mind:

This article is for educational purposes only and is not intended to diagnose, treat, cure or prevent diseases. We cannot provide medical advice or specific advice on products related to treatments of a disease or illness. You must consult with your professional health care provider before starting any diet changes, exercise or supplementation program, and before taking, varying the dosage of or ceasing to take any medication.