Part 3: My first accidental exposure to gluten that lead to a gastroscopy

Have you ever wondered what it would be like to eat gluten again? I was accidentally exposed to gluten at a restaurant, and I can tell you that I never want this to happen again. This was my realization that I am 100% celiac, especially with how quickly my body reacted to it and for how long the symptoms stuck around for afterwards. Here is my story of being given gluten and how it brought me to doing the gastroscopy.

Just over a year of being gluten free, I went to a restaurant and ordered a gluten free panini. I told the server that it was for a celiac and to tell the chef to be careful with cross contamination. I saw her write celiac down and I then took a seat waiting for the food to be brought to me. It wasn’t until this day that I truly believed I was a celiac. I bit into the sandwich and I remember looking up at my friend and saying, “I sure hope this is gluten free,” because it tasted very strange to me. I ate the whole thing, and twenty minutes later I had major brain fog, a headache and nausea, and I was fighting to keep the food down. Then forty minutes later I had to find a toilet as I was puking and shortly after having very sharp pains in my gut. It felt as though I had eaten a bucket of razor blades. I then had a month or more of bloating, brain fog, sharp pains in my gut, muscle and joint pain, vision problems, hair loss, dermatitis herpetiformis, rashes and acne, decreased appetite, lack of sleep, menstrual pain and PMS, sadness, anxiety, irritation, I found it hard to breathe, and anything I ate or drank caused my stomach to bloat and hurt even more. 

The first photo to the left is a photo of the cystic acne that can occur with gluten exposure. The photo on the right, which also shows up on my upper arms, is a photo of one cheek from my buttocks with another form of dermatitis herpetiformis (I showed what happens with my hands in my blog, “Part one“). Both of these photos have been taken in the last year, and both of these conditions I had back in high school as well.

I finally went to see my doctor a month after eating the sandwich wondering what had happened. We did the blood test and my antibodies were right back up to greater then 300 (they should be less then 12). It took me 8 months to recover and feel like a human again and another 4 months to be my 100% normal self. All from eating one sandwich that was made with the wrong bread. From this moment on I had to go in every 3 months to have blood taken to test my iron levels and tTG levels, and the results were sent to a gastroenterologist and my family doctor. 

I think it bothered me more that the chef of the restaurant didn’t seem to care, I got a ‘copy and paste’ response from him with no apology. He blamed his front staff for not telling me about cross contamination possibilities but I explained that this was not just cross contamination, this was giving me the completely wrong bread. I found out later that three more celiac’s went to his restaurant and also became sick after my experience, which of course left me livid. However, from this experience and others over the last three years, I have now learned what it is like to fully eat something that is made with gluten and eat something that has been cross contaminated. 

A product that is made with gluten: you will know and taste the difference, and you will have an autoimmune reaction right away (as I mentioned at the beginning of this blog). It will make you awfully sick for months (mine lasted 8-12 months), and it may even bump back your intestinal healing time by a few months or years.

A product that has been cross contaminated with gluten: unfortunately, you cannot taste this. You may have symptoms of bloating, headaches or any of the other typical symptoms of celiac disease, the day of or a few days later. The bloating from my last cross contamination experience lasted 3-4 days but some other physical symptoms of rashes, acne, dermatitis herpetiformis, constipation and diarrhea, many toilet visits, and not to mention the mental side of aggravation, anxiety, sleepless nights, and depression (to name a few) lasted about 2-3 months after exposure.

The photos on top is after a weekend away being cross contaminated with gluten while eating out. The photos on the bottom is just three days after with a huge improvement in the bloat but not feeling 100% (I am completely relaxed in all photos).

For the first two and a half years after being diagnosed, I was only a celiac through a blood test. To be a “true celiac” you have to be diagnosed through a biopsy. In order to have a biopsy, you have to be referred to a gastroenterologist, and here in some parts of Canada it takes two years to get in to see one. Which means you will go two years of eating gluten free and then have to do the ‘gluten challenge’ and reintroduce it into your body for six weeks before the biopsy so there is a positive to the test if you are truly celiac.

One year after eating the sandwich and four blood tests later, my tTG levels were sticking around forty and I received a call to see the gastroenterologist and have the biopsy done. After review of my blood tests, she decided to not have me eat gluten before the test as she wanted to see if I was consuming gluten from something that may contain it without me knowing. She also said because of how high my blood levels were, she had no doubt in her mind that I was a celiac and did not want to put me through six weeks of eating my kryptonite (I dodged a serious bullet there). To add, I was sent home with a crohn’s disease home kit to rule this out, and this thankfully, came back negative. 

The Biopsy…

First of all, there are two types of biopsies. A gastroscopy (or endoscopy), is through the mouth and down into the small intestine, and a colonoscopy, is up the rectum and usually used to take a sample of the large intestine but can also be used for samples of the small intestine. What I had done, was a gastroscopy.

The day of the biopsy came and I was a bundle of nerves, not just because this is minor surgery, but mostly because this would be the true test to confirm if I was a celiac, and if it did come back positive, this meant I was still eating gluten somehow. 

The process of the biopsy was nothing to be worried about, you are called in and asked to put on a hospital gown. Then the nurse comes back in and answers any questions you may have and informs you that you cannot drive or make any legal decisions for twenty-four hours after the surgery. The IV is placed in about thirty minutes before you are brought into the operation room, where doctor will ask if you have any questions and ask if it is common for you to have a reactive gag reflex (because if you do, they have a liquid that can be sprayed to the back of the throat to stop this). You are then put under conscious sedation. 

A photo of me after the biopsy was finished; happier than a pig in shit…pun intended.

With my experience, I woke up choking (I did not get the spray because this would have been another hour of sticking around at the hospital after), but I only remember seeing a blurred vision of the video footage of my insides, and then fell back to sleep. I woke up feeling really rested and just a bit sore in my abdomen when I tried to sit up. I also had a sore throat. The nurse gave me a drink and a gluten free snack and checked everything was okay, and told me the doctor did not see anything relevant to the eye, but a few biopsy samples had been taken. She told me the doctor would be calling me in two weeks with my results. I got dressed and my ride came to pick me up, then I was homebound. I remember having a sore throat and abdomen when I would eat just for a few days after, and tired just one day after.

Two weeks later the doctor called and I found out that I was indeed consuming gluten from somewhere, and was officially diagnosed with celiac disease. Parts of my biopsy showed the damaged villi in my small intestine, which indicated gluten consumption and celiac disease.

To this day, I still have digestive issues including constipation, diarrhoea and everything in-between. This included colour and consistency issues of the stool, going to the bathroom 3-5 times in the morning from the moment I wake up, and after I eat, and to top it off, some foods come out undigested. I also have other symptoms, including brain fog, headaches, rashes and acne, hair loss, feeling dizzy when getting up from a seated position, bloating (to the point that I look 4 months pregnant), sleepless nights, insomnia (only had this happened once in the last few months), waking up in a sweat, menstrual pain (only once), hormonal imbalances, and bad PMS. I should also mention that in the last year I have had 8-10 colds, one of which turned into bronchitis and another a sinus infection; that means three rounds of antibiotics just this year. I have been waking up with phlegm in my throat and left lung everyday this year, except one month when I decided to go back on the hypoallergenic diet I spoke about in my last blog post. 

Photo on the left is a photo of me in June 2018, one and a half years after diagnosis with a huge amount of hair growth on the bottom of my head (you can see in the photo how much thicker my hair was by my shoulders). Photo on the right is me in Aug 2018, with my hair chopped to the new growth length.

So why do I still have symptoms even with being 100% gluten free? It could be because my gut is still healing after many years of eating something I should not have been. Research does state that it can take anywhere from 6 months to 5 years for the intestinal lining to heal after an exposure to gluten. It can also be due to little micro cross contamination exposures with going out to eat at restaurants and processed foods made in a facility that contains gluten, as everything else in my life I know for sure is gluten free. I have even started to switch over to gluten free beauty products such as toothpaste, make up, shampoos and conditioner and soaps. 

January 2020 will be the third anniversary of my diagnosis, and there is still a lot of learning and researching to do. But I am excited to share my path through this new gluten free lifestyle that I am grateful for, because I can finally start healing and help other people while I am at it, via this blog. 

The healing process of celiac disease can be very frustrating and may be a longer process then expected. However, this does not mean that it will never happen; learn as much as you can and never loose belief that you can do this. 

Until next week my friends,

LEW 

xxx

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One thought on “Part 3: My first accidental exposure to gluten that lead to a gastroscopy

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

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