Part 2: The first year after diagnosis

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.

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. 

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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One thought on “Part 2: The first year after diagnosis

  1. Pingback: 5 Things I Wish I Knew When I Was Diagnosed With Celiac Disease | LEW's Life

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