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The Struggles of Diet Related Illnesses



Story time!!



Just over a year ago I was diagnosed with something called Coeliac’s Disease. Coeliac’s is an autoimmune disease in which the immune system reacts abnormally to gluten causing damage to the bowel. If left undiagnosed, and untreated, this disease can lead to chronic systemic inflammation, malnutrition and even bowel cancer. The only treatment currently available is to maintain a 100% gluten free diet with absolutely 0 cross contamination at all times. For those who don’t know, gluten is a protein found in wheat, rye, oats, barley and triticale. So basically, everything that tastes good is off limits. This means that a cheat day consists of eating a food item that “may contain traces of gluten” or eating at a restaurant that cannot guarantee there is no cross contamination.

This diagnosis didn’t come straight away. It was the result of a 4-year period of different doctors and hospital visits, misdiagnoses, and way too much money spent of specialist visits. I was experiencing severe abdominal pain for weeks on end that led to ER visits and doctors who had no clue what was going on making me leave with strong painkillers. It was only with a flu that just didn’t seem to go away that I finally got on the right path. After 2 weeks of terrible flu like symptoms I was fed up and went to a GP that was close to work. I had never been to this one before but it was in a convenient location so I thought why not? The doctor spent over an hour listening to my entire medical history, taking notes and trying to make sense of it all. Eventually when she noticed that my heart rate was 121 BPM, I was rushed into an emergency ECG and was later told to get blood tests immediately. Thankfully my heart rate settled and it was determined that it was my body fighting an intense infection that was later found in my blood work. This blood work however led to another discovery. In all the blood tests I had had over the last 4 years, not one had tested my thyroid function. When they finally did, they found markers of Hashimotos disease. This is a disease in which your immune system attacks your thyroid – a small gland at the base of your neck, below where the Adams Apple would be on a man, that regulates the body’s metabolic rate. This disease can lead to serious issues with metabolism causing unexpected weight gain. After an ultrasound to confirm this diagnosis, I was referred to an Endocrinologist who suspected I may have Coeliac’s disease as it often goes hand in hand with this and the other autoimmune diseases that I currently suffer from. At the time I thought, this is completely ridiculous, but the more I read the more it made sense and a blood test confirmed the doctor’s hypothesis. 

But the ordeal didn’t end there, the endocrinologist was still hesitant to confirm I had what he expected without further testing. I was referred to yet another specialist, a gastroenterologist this time, to have a gastroscopy and small bowel biopsy performed to determine the damage gluten had been doing to my bowels. When I explained the symptoms to this doctor, the test was rushed and within 2 weeks of the first appointment, I was taken in to have a camera inserted down my throat and to have a small piece of tissue from my bowel removed and tested. The results came back and it was conclusive, I had coeliac disease. What astounded me was that in all the doctors I had visited, in all the “breakthroughs” that came out of other tests, this very simple issue was never found. I later found out that Thyroid Function and Coeliac’s are not something that are tested for in routine blood tests. Coeliac’s is something that 1 in 70 people worldwide suffer with and so many are suffering in silence, trying to work out what is wrong with their body when a simple blood test might give them the answers.

Only yesterday I found myself in the same hospital room to have the same test repeated. This is common in the early stages of diagnosis, after 6 months on a 100% gluten free diet you are expected to repeat the gastroscopy again to see how the diet is impacting your bowel function. I am still waiting on results, hoping and praying that it is all working and that I have not been eating something that is unknowingly causing serious damage to my body. This is a very simple procedure, it only takes about 15 minutes and you are, in most cases, in and out the same day. I get some negative side effects from the anaesthetic and I know many people do but all in all it is a fairly straight forward procedure. The issue is, that it is just another burden in the lives of people suffering with this disease. Ongoing testing, the cost of specialist appointments, the price of gluten free food has a detrimental impact on each and every one of us.  

In the aftermath of the diagnosis, everything started to click. All of the pain made perfect sense and suddenly I had a very simple way to deal with a very serious problem. But it was harder than anyone seems to understand, avoiding something you have lived your entire life enjoying is not a simple thing to get used to. On top of this, it takes up to 6 months for the tiniest piece of gluten to leave your system meaning even the slightest set back could leave you in excruciating pain, if not on the toilet for half the day.

The big issue I wanted to call out in this was the fact that the gluten free diet has become a fad diet for people desperately trying to find ways to lose weight without eating healthy and exercising. Now I sincerely apologise if this seems harsh, but when I can’t walk into a restaurant and ask for a gluten free option without being looked at like I have committed a crime we have a serious problem. The gluten free diet will not help you lose weight! In fact, most gluten free foods are high in fat and sugar and contain artificial flavours to make them somewhat consumable. Yet some Kardashian wannabee told millennials to cut it out and suddenly I can’t do literally the only thing that I can to save myself from getting bowel cancer without paying at least $4 more for it. I have been to restaurants that have told me their food is gluten free and I have woken up the next day knowing full well it wasn’t and when you complain they look at you like you are just some stupid kid. This needs to stop, if you have no medical reason for not eating gluten then just eat it! You are doing more harm than good not just to your own body but to other people who have no choice but to eat this way.



Also, a massive shout out to the restaurants who have gluten free options marked on their menus or who don’t charge you a small fortune to change to a GF option, or who have allergen statements readily available for all customers. You guys are the real MVP’s in the service industry- you should be proud of yourselves. People without allergies or without this disease, don’t understand how hard it is to walk into a restaurant and have to try and explain a completely new concept to a person who has never heard of it before. You don’t know how hard it is eating a meal when you just can’t be certain the damage it is going to do to your body. You don’t understand the embarrassment of that look on a server’s face when you ask if they have anything gluten free or the embarrassment when they don’t understand and you have to walk out looking like a fool.

I wanted to shout out to a few restaurants that I have been particularly helpful in this situation and who always have gluten free options available. There are so many more amazing places doing amazing things but this is just a few in my local area:

-       Pancakes on the rocks @ Beverly Hills
-       Overdose Specialty Coffee @ Ramsgate Beach
-       Lashings Burgers @ Brighton Le Sands
-       Café Free @ Neutral Bay
-       Chicken Ace @ Ramsgate Beach
-       Burger Co @ Hurstville
-       Bullpen Sports Diner @ Wollongong
-       Zen Chinese Restaurant @ Ramsgate RSL

If you went into cardiac arrest at a shopping mall, you would expect a defibulartor to be brought to you. And you certainly would not expect the paramedics to take out your wallet and charge you to use it. So, don’t expect people suffering from Coeliac’s disease to eat gluten and do not expect them to pay a minimum of $4 more per meal to ensure that it is served and prepared the right way. If you are in food service, you need to understand food related illnesses and allergies, it is that simple! If it is a concept you struggle with or if it is something you are going to make someone feel inferior for, just don’t even bother.

And for the love of god, stop cutting gluten if you don’t need to!!!



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