Dry Eyes and Celiac Disease

For the last few months, my left eye has been very dry. It burns, itches and is very irritated, I have had this on and off for years but it has just become more frequent in the last few months. I went to see my optometrist and he mentioned my eyes look perfectly healthy and that it could be that I moved from a humid climate to a dry climate. I decided to do a bit more digging because the drops he gave me did not correct the issue completely and it only happens some days and not others. Because I have an autoimmune disease (celiac disease) I tend to see if any of the ongoing symptoms I have could be related to this condition. And sure enough, dry eyes can occur with someone who has celiac disease.

The Facts:

It is estimated that half of celiac patients not only show digestive issues but also other symptoms throughout the body. They vary depending on age at onset, gender, the strength of the immune system, and the genetic predisposition of the individual. There is a heap of medical evidence that the condition may not only effect the gastrointestinal tract (GI) but also affect the reproductive system, central nervous system, brain, and skin.

Can Celiac Disease affect vision?

In short, yes. According to recent studies, there is a strong connection between celiac disease and eye health. “The ophthalmic manifestations are within the extra-intestinal manifestations, and can be divided into autoimmune disorders and absorptive disabilities. The manifestations related to malnutrion are correlated to the low levels of vitamin A, vitamin D and calcium. It could cause retinopathy, cataract, dry eye and pseudotumor cerebri,” from the article, ‘Ophthalmologic manifestations of celiac disease.’

Celiac Disease and Sjögren’s Syndrome

Sjögren’s syndrome is one of several autoimmune disorders that can go hand-in-hand with celiac disease. Whereas celiac disease primarily affects the small intestine, Sjögren’s syndrome mostly affects lacrimal and salivary glands. These are glands responsible for producing tears and saliva in your eyes and mouth respectively. 

Relating this to myself, I ate a muffin one weekend when I was away on a course. It was gluten free but soon realized it most likely was cross contaminated. Shortly after eating that muffin I began to get all the symptoms of celiac disease and the worst one that weekend was brain fog. A new symptom that occurred that weekend was a very dry mouth and really dry eyes. This of course started to scare me because I have never experienced this before and no matter how much water I drank I could not help my dry mouth. My eyes were burning that weekend, and even with keeping them closed for extended periods at a time, they were very dry. This thankfully went away after a few days.

According to the National Institute of Neurological Disorders, about 1-4 million North Americans have Sjögren’s syndrome, 90% are women over 40 years of age. The body of a person with Sjögren’s syndrome, cannot produce adequate moisture, which can cause havoc on your eyes. This condition is said to be a secondary autoimmune disease which is triggered by celiac disease. In worst cases, it can lead to extensive eye damage and even vision loss.

The symptoms of Sjögren’s syndrome can vary from person to person, however the most common symptoms is a dry mouth and eyes. Other symptoms that can occur are: joint pain, rashes, fatigue, and sometimes vaginal dryness. The eyes not only become dry but can also have a burning sensation.

Dry eye syndrome and Celiac Disease

Dry Eye Syndrome is a condition where the lacrimal glands cannot produce enough tears or the eyes are not able to maintain a normal tear layer to cover the surface. This can be a problem because the eyes cannot get rid of germs, dust, and other irritants that may come their way. This can cause a dry eye, burning sensation or feeling as though there is something lodged in your eyes. There can also be an array of other symptoms such as redness, pain, burning and stinging.

Some medical studies have shown that celiac disease may cause dry eye due to the inability to absorb nutrients from the small bowel. One important nutrient is vitamin A, this is essential for eye health. Decreased amounts of vitamin A can cause a drastic change to squamous cells (the outermost layer of the skin) and a loss of goblet cells (found in the respiratory and intestinal tracts, which secretes the main component of mucus). Both of these cells are important for the overall function of the eyes epithelium. Over time, acute deficiency of vitamin A can lead to dry eye syndrome and a list of other vision impairments such as night blindness.

In conclusion, celiac disease does not just affect the gastrointestinal tract, it can have an array of other symptoms that can affect all other systems within the body. Other autoimmune conditions can occur as a result of celiac disease or vice versa, such as Sjögren’s syndrome. I do not believe that I personally have Sjögren’s syndrome because these symptoms only occur when I have accidentally eaten gluten or something that was cross contaminated with gluten. It seems that once I begin to heal my gut, symptoms of dry eyes and mouth seems to go away. However, my TTG levels (blood test for celiac disease) are currently still higher then they should be, so malabsorption of vitamin A along with other essential vitamins can be causing ongoing symptoms. Regardless of what it is that you are experiencing, you should always consult a healthcare professional to reach a diagnosis or make a plan on how to get you feeling your best.

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4768497/

https://www.imaware.health/blog/the-connection-between-celiac-and-eye-health

Please Keep This Disclaimer in Mind:

Articles are for educational purposes only and are not intended to diagnose, treat, cure or prevent diseases. We cannot and do not provide medical advice or specific advice on products related to treatments of a disease or illness.

You must not rely on the information on our website as an alternative to medical advice from your doctor or other professional healthcare providers.

You should never delay seeking medical advice, disregard medical advice or discontinue medical treatment because of information on our website.

It is your responsibility to consult with your professional health care providers before starting any diet changes, exercise or supplementation program, and before taking; varying the dosage and / or ceasing to take any medication.

We do not collect any personal information or store cookies.  You can turn off cookies on your web browsers.


Where To Eat Gluten Free In Melbourne

Melbourne has a very large hipster vibe with lots of little shops, boutiques and restaurants all over the inner city. Not only is Melbourne known for it’s wide range of graffiti and wall art but it is also very well known for it’s food. There is a huge variety of many different types of restaurants that you can choose from, ranging anywhere from Mexican to Greek, fancy bougie pubs, and bars that have a dark atmosphere but extremely fun rock and roll vibe. Depending on the experience you are feeling, Melbourne has it all.

If you have celiac disease or you are gluten intolerant, there are many options for gluten free within the city. I have to say that I am very impressed with everywhere I have been in Australia thus far for gluten free food. This is the first time I have been to restaurants and when I say I have celiac disease they understand that it is not just the ingredients of the food we are eating but it is also where and how it is prepared. Most restaurants will tell you honestly if there is a chance of cross contamination or if they have a separate cooking space, toaster, fryer, or oven. It feels like everywhere in Australia, they take celiac disease, food intolerances or allergies very seriously. However, keep in mind that regardless it is very important to speak to the chef, manager or your server about the details of your dietary requirements to be sure you will not become sick.

I wish I could have spent more time in Melbourne but here is a list of all the restaurants I ate as someone with celiac disease. Not one of the restaurants I have mentioned made me sick or caused a reaction.

1) Stalactites

This Greek restaurant, located downtown Melbourne, is highly recommended for those with celiac disease as it is accredited by the Australian Coeliac Association. This is the first time I have been to a restaurant that has the stamp of approval from the country’s coeliac association. There is a separate workspace for the chef’s in the kitchen to avoid cross contamination of gluten into any food, this includes chopping surfaces, oven’s, and anywhere to heat up the kebab’s and fryers for the fries/chips.

Mixed Kebab

Not only is it safe for a celiac to eat at, but the food is out of this world fantastic. This was the first time in over 3 years since my diagnosis that I have been able to safely eat a kebab. The food here is so good that I went three days in a row. The first 2 days I had the mixed souvlaki (kebab) and the final day I had the lamb fillet kebab. I believe there are vegetarian options as well along with other amazingly delicious looking gluten free dishes. However, I would highly recommend the kebab as you will not believe the pita bread is gluten free, so good that I want to figure out the recipe so I can make it at home.

Coeliac Certified Sticker

Each wrap I ordered came with a napkin that had the coeliac association sticker on it. This will both ease your mind that the wraps did not get mixed up, you know the chef knew that it had to be appropriate for a celiac with no cross contamination, but also, how cool is that?!

The staff is very friendly and knowledgeable about any dietary requirements you may have. The environment is welcoming and bright with a sit down and take out option, the food was also served pretty darn quick as well.

As I mentioned, I ate here 3 days in a row, all with kebab’s, and had no reactions to gluten at all. I would highly recommend this restaurant if you are in the area and looking for a celiac safe restaurant.

Location: 177/183 Lonsdale St, Melbourne VIC 3000, Australia

Phone Number:+61 3 9663 3316

Menu:

2) Roule Galette

This is a very sweet little French cafe located downtown Melbourne very close to the Flinders Street Railway Station and the City Library. This adorable cafe is located within the beautiful Flinders lane, mixed in with other boutiques, shops and restaurants. You will know you are down the right street when you see a pink painted mural on the back wall of the street of two kangaroos dressed up.

Chicken Avocado Crêpe

This restaurant has gluten free options suitable for a celiac along with vegan and vegetarian. They informed me that they have a separate gluten free crêpe maker to avoid cross contamination. The gluten free crêpes are fantastically delicious and have options of being both savoury and sweet. They were so good that I bought both a savoury and sweet crêpe in the same visit.

La Belle Normande Crêpe

I began with the avocado chicken crêpe, along with a French earl grey tea with almond milk and some of the best honey I have ever had. The crêpe is massive as it is the size of a standard dinner plate. The chicken was perfectly cooked, and was a perfect match with the avocado, tomato, emmental cheese, home- made basil pesto. Directly after this we ordered the La Belle Normande: Cinnamon poached apple, ice cream (can be vegan), homemade whipped cream, homemade salted caramel, my mouth was watering for hours after eating this.

The staff here are absolutely lovely, knowledgeable about dietary requirements and have some of the best French accents I have heard. The environment of the cafe will make you feel as though you have transported to France, the music is enjoyable and for over flow reasons, they have a small cafe on both sides of the cobblestone street. They offer breakfast, lunch, dinner and take away. I would highly recommend visiting this adorable French getaway for some of the best crêpes you will ever eat.

Location: Scott Alley, 237/241 Flinders Ln, Melbourne VIC 3000, Australia

Phone Number:+61 3 9639 0307

Menu:

3) Bodega Underground

If you like Mexican food, this is the place for you. Everything in this restaurant is gluten free so there is no need for anyone with Celiac Disease to be nervous about cross contamination.

Totopos With Guacamole and Elote

We went with the ‘feed me’ option on the menu, and as fantastically good as this option was, I would not suggest it unless you are starving…it was a lot of food, hence the name. With this option you get the totopos with guacamole, papas, elote, charred cauliflower, lamb riblets, two taco servings: carnitas, tacos de frijoles and end with the churros con dulce de leche. All of this food will cost you $50 ASD per person, and is to serve two people. This is a great option at this restaurant to try almost everything on the menu.

Every single dish we ate at this restaurant, I would go back for. The nachos are perfectly crispy and a great pair with their authentic guacamole, the tacos are a perfect size and just the right amount of filling along with being jam packed with flavour. The street corn was out of this world, I never would have thought to put parmesan cheese on BBQ corn on the cob. The papas were soft and delicious potato bites, paired perfectly with their chipotle in adobo sauce. The charred cauliflower was a meal on it’s own and I would 100% go back for this one if you are a vegetarian, it is a perfectly cooked head of cauliflower covered with a delicious cheese sauce. The lamb riblets fall off the bone as you pick them up and melt in your mouth. Finally, ending with gluten free churros…I never thought I would see the day that I could eat a churros again, this was a dream come true for a celiac. They were crunchy, covered in sugar and cinnamon and the dulce de leche sauce, I wanted to drink out of the bowl.

The environment of this great restaurant is fantastic along with the staff as well, I would highly recommend this restaurant to anyone looking for a gluten free option for Mexican food in downtown Melbourne.

Location: 55 Little Bourke St, Melbourne VIC 3000, Australia

Phone Number:+61 3 9650 9979

Menu:

If you find yourself by Smith Street, seek out CIBI and Saba’s Ethiopian restaurant as they are both just a block or two away.

4) CIBI

This is a very sweet and down to earth restaurant serving Japanese cuisine. It is not just a restaurant, there is a beautiful plant store and Japanese pottery, knives and other special treasures you may not be able to find anywhere else. I truly wish I had more room in my travel bag to get some items back home.

The staff is lovely, and at first they were not too sure about cross contamination or food being 100% gluten free for a Celiac, however the chef pulled through and can I tell you how much I appreciated this! The food was very healthy, light but filling and exactly what I wanted to eat that day.

We both had chicken dishes from there that were both fantastic. My partner Chris had the lunch bowl which consisted of slow cooked chicken with green olives and herbs served with beets and daikon salad and grains. I had the chicken soboro which consisted of free range chicken mince, cooked with miso and ginger, a soy egg, greens and edamame, mizuna salad served with their CIBI rice blend. The chicken was cooked perfectly and the rice was cooked in a way that made it some of the best rice I have eaten in a long time. I did not feel bloated or as if I had eaten too much food after this meal, it is very nutritious and a perfect serving. I paired my meal with one of their in house made summer drinks. I would highly recommend checking this place out if you get the chance and you find yourself on Smith Street.

It is a great environment for doing some computer work, going in for a treat or tea/coffee, or for an early or later lunch.

Location: 33/39 Keele St, Collingwood VIC 3066, Australia

Phone Number:+61 481 398 686

Menu:


5) Saba’s Ethiopian Restaurant

Vegetarian Combination

This was my first time eating Ethiopian food and after the experience I had at this restaurant, it will surely not be my last! I found this restaurant wandering down Brunswick Street when I was very hungry, saw their menu in the window and told myself I had to give it a try. They have a celiac safe and vegan friendly menu, I was told their chef is celiac, so they know all about how to serve you safely! Music to my ears.

Injera Basket

All meals are to be eaten with your hands using the fantastic Injera bread, not using utensils, however, I did see a few people using utensils to eat so this may be an option if you prefer. I went with the vegetarian combination where you get to choose three of their delicious vegetarian dishes, and believe me when I tell you, if you are not vegetarian, you will not be disappointed. It comes in a beautiful Injera basket with a plate inside of your Injera bread, which is made of teff flour. After this you are served your three servings of the vegetarian dishes you chose. I went with the Ful, Shiro and Dinish dishes, all were very flavourful and had individual unique spices and ingredients used. The Ful is made with fava beans, spices, egg and feta cheese (this can be made vegan if preferred), the Shiro is a chickpea and berbere paste with garlic and ginger, and the Dinish is potatoes, cabbage and carrots cooked in turmeric and other spices. Every single one I want to eat again, this is a very filling and nutritious meal.

The staff is absolutely lovely and the environment is just the same with a few Injera baskets beautifully placed on the wall to admire. I cannot wait to go to this restaurant again when I am back in Melbourne.

Location: 328 Brunswick St, Fitzroy VIC 3065, Australia

Phone Number:+61 3 8589 0442

Menu:


Phlegm and Celiac Disease

ILLUSTRATIONS BY RYAN SNOOK. PHOTOGRAPH BY JEFF MINTON (GROOMER: STEPHANIE NICOLE SMITH)

The year 2019 will be remembered for a lot of things, but one I will remember well is how many times I was sick with a respiratory cold last year. On hand, I have had 8-10 colds just last year alone starting in January. I went home to Ontario last Christmas and came back with a cold, this bugger did not go away for weeks. I was told by many patients and friends of mine in town that it is a longer cold and will go away soon, so beside what my conscious was telling me to do, I did not go see a doctor. Then I went to Arizona…almost missed my flight and had to run through the airport to catch the plane. This is when I thought to myself, something is terribly wrong.  It felt like I had a chunk of bubble gum stuck in my air passage, and I could not catch my breath through my nose or mouth. Coughed up a bunch of phlegm and kept running, because, I was NOT going to miss this flight. Long story short, I met a not so happy customs lady that clearly did not understand the words, “I have 10 minutes to get on my flight.” I got on the plane and had an amazing trip hiking, exploring and coughing up about 10 pounds of phlegm.

Why the drawn out story? Because I want you to learn from my mistake, if you have a productive cough for more then a week…go see a doctor! I got back from the trip, 5 weeks after the cold had begun, and was diagnosed with bronchitis. I have never had bronchitis before in my life. I was placed on two rounds of antibiotics, because the first round didn’t touch it; and I’m sure you can imagine how much my gut loved this…not really.

Gross photo, I know. This is what was coming out of my nose after getting back from Peru.

For 11 months after the first cold in January, that turned into bronchitis five weeks later, I have had cold after cold, and was lucky enough to come home with a souvenir from Peru, a sinus infection. I have woken up with phlegm in my throat and nose every morning since and have been woken up coughing in the night due to nasal drip. It was not until I decided to go back on the hypoallergenic diet for a month that I was finally phlegm free! Then I went back to eating grains, processed foods and a bit of dairy and, BAM, it was back. This had me thinking, can my gut health as a celiac (or those of you who are not celiac), have an effect on my respiratory system? 

Now, as celiac disease is an autoimmune disease of the small intestine and can indirectly effect the whole body, I knew I could not be far off with this assumption, considering 70-90% of your immune system is housed in your gut. So I started researching, and I am here to give you the results! Needless to say, I was right…

There have been many cases of people within the world with chronic pulmonary conditions, being diagnosed with celiac disease and after going on a gluten free diet, the pulmonary symptoms decreased and improved. Even though having respiratory issues with celiac disease is a rare case and is an atypical symptom, if you have a leaky gut (intestinal hyperpermeability), there is a chance your brain, lung tissue, skin and blood vessels are effected and can lead to edema in the body.

One of the top reason’s for repeat infections and illnesses of the respiratory tract such as pneumonia, bronchitis, and sinus infections could be due to damage of the gut lining. If your gut lining is damaged, your immune system is compromised and this can lead to development of any infection especially if you are exposed to bacteria and viruses.

Putting this into relation of a celiac, if we consume just a crumb of gluten, our gut lining will be damaged due to the villi flattening which in turn damages the immune system and can increase the likelihood of infections throughout the whole body, not just the respiratory system.

Another reason for infections of the respiratory system could be due to malnutrition that is commonly seen in inflamed celiac’s who have ingested gluten. If the villi are flattened in the small intestine, the vitamins, minerals and nutrients that are essential to help fight off infections will not be absorbed. 

One major nutrient that is typically not absorbed with celiac disease is iron. If iron is not being absorbed, anemia can occur within the body and if there is not enough red blood cells transferring enough oxygen in the body, people can feel short of breath even with minimal exertion. This is something I can relate to because one symptom that I experienced growing up was anemia; I was always short of breath. Today, knowing that I am celiac and eating a gluten free diet, I am happily no longer anemic after years of trying to correct it. Instead, I am on the boarder of no longer being iron deficient (yay!) and my iron levels are increasing due to a gluten free diet and my gut lining healing. 

However, I think why I am not 100% healed and having chest infection after chest infection along with many other symptoms in my body, is due to consistent accidental exposure to gluten when going out to eat and traveling. I know I have had gluten exposures because in the year 2019, the Tissue Transglutaminase Antibodies (tTG-IgA) in my blood have stayed high and the iron levels have been fluctuating all year.

Currently for the last 3 days, I have gone back on a grain free, dairy free and whole food diet (pretty much a paleo diet), and today I did not wake up having to clear my throat of phlegm in the morning! I am excited to see how many more lingering symptoms will decrease with this diet change.

It has been said that going on this type of diet helps to decrease inflammation within the body. However, doing this diet for a few days to a week will not be enough time to fully correct and heal your body. This is a diet that needs to be followed for 6 months to a year, because it takes this long for the gut lining to heal and function properly again.

In conclusion, 14-20 breaths a minute is normal, but if you have a chronic cough, constantly clearing your throat, or have post nasal drip, you may want to see if grains or gluten is the cause. This is not to say you have celiac disease but you may have some inflammation within your body that needs to be corrected and needs time to heal.

References: 

https://glutenfreern.com/the-relationship-between-the-respiratory-system-and-celiac-disease-ep028/

https://www.researchgate.net/publication/236066468_Hemoptysis_in_patients_of_celiac_disease_with_disproportionately_severe_anemia_Tip_of_the_iceberg

https://thorax.bmj.com/content/57/1/91

https://www.pediatriconcall.com/pediatric-journal/view/fulltext-articles/986/J/0/0/521/0

https://www.ncbi.nlm.nih.gov/pubmed/18603176

Please Keep This Disclaimer in Mind:

Articles are for educational purposes only and are not intended to diagnose, treat, cure or prevent diseases. We cannot and do not provide medical advice or specific advice on products related to treatments of a disease or illness.

You must not rely on the information on our website as an alternative to medical advice from your doctor or other professional healthcare providers.

You should never delay seeking medical advice, disregard medical advice or discontinue medical treatment because of information on our website.

It is your responsibility to consult with your professional health care providers before starting any diet changes, exercise or supplementation program, and before taking; varying the dosage and / or ceasing to take any medication.

We do not collect any personal information or store cookies.  You can turn off cookies on your web browsers.


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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