What It’s Like Being A Coeliac

coeliac disease, what coeliac disease is like, gluten intolerance vs coeliac disease, this stuff is golden,

A long while ago I went out for lunch with a mate from college, who had invited another one of her friends to join us. I was quite nervous as I always am meeting new people and made silly jokes to hide my insecurity (though sometimes I am sure these jokes just embellish it for all to see). Anyway, we were at one of those Italian chain restaurants – one that had gluten free pizza bases so that I could actually eat something that wasn’t just a plain salad (sometimes I can’t eat the dressing cos of stupid flour).

As the other two started to browse the menu, contemplating on what to choose, I barely needed to look at it because I go for the same thing every single time (a vegetarian, gluten free pizza – vegetarian because I always feel like the chain restaurants’ meat pizzas just don’t taste as good, but I digress). My friend’s friend started to talk to me about gluten, asking what coeliac disease was.

I told her it’s this really not fun auto-immune disease that means I can never ever ever ever eat gluten, ever. If I do eat gluten I will be sick for days, though once an old lady told me in the Free From section of the supermarket that eating gluten as a coeliac can take 6 weeks of recovery time for your stomach to be at 100% again, so who knows.

Anyway, the friend of a friend nodded along and said how she had wanted to try gluten free and thought seeing as I was having one that she would also have a gluten free pizza.

My response was, DON’T.

I begged her to choose a real pizza, if only for my sake. Thankfully after I described to her the unpleasantness of chain restaurant pizza bases (they are all thin, tough to cut and like cardboard masquerading as bread), she decided to go for a regular pizza, though she chose a white sauce one rather than a tomato sauce (clearly not the best orderer).

In many ways I am very grateful that the gluten free diet became so popular with those who wanted to be healthier – it came at the perfect time for me as I had just been diagnosed when more and more GF products were being put on the shelves.

However in some ways I am pissed about the GF diet craze as it lessened the severity of gluten being on my plate when I ask for something gluten free at a restaurant. A single crumb can cause me ill-health (I call it “being glutened” because I’m creative like that), and sometimes I think gluten intolerance and coeliac disease get confused, ending up with me having a very sore belly for the next few days.

As my gluten sensitivity is off the chart, I also get very suspicious and paranoid of food served to me in restaurants. Whilst my mother was visiting us a few months ago, we had a light lunch in a posh little cafe on board the Royal Yacht Britannia. I ordered a ham sandwich because amazingly, they had gluten-free bread. My sandwiches arrived looking fancy with some surprise crisps sitting alongside them. As I did not know about these crisps or where they had come from I didn’t dare touch my meal until I had flagged down one of the waitresses and got them to check whether the crisps were okay for me to eat. Even when she came back with a thumbs up I was still suspicious of these crisps, but ate them anyway because 1) I was hungry as I hadn’t eaten breakfast and 2) if they did poison me I could sue and win big bucks.

My suspicion mixed with my imagination also led me to think that perhaps my boyfriend (now ex,) was poisoning me by putting gluten in my food when I was going through a particularly long period of belly aches (he wasn’t and he didn’t become my ex because of this, FYI).

Yep, that’s some rather ridiculous paranoia right there.

Anyway, here’s some things you may not know about coeliac disease:

  • there is no cure
  • it is a life long disease
  • it is genetic
  • it can cause all kinds of horrible things if not looked after properly like; miscarriage, bowel cancer, osteoporosis, anaemia, etc. These things have sometimes kept me up at night, in a state of worry.
  • Americans spell it wrong (without the ‘o’)
  • it is commonly misdiagnosed (I started complaining of belly aches when I was 12 and I was diagnosed at the age of 20)
  • it is an autoimmune disease, which basically means that my body treats gluten as a threat (like getting the flu or something) so it goes into overdrive to ‘kill’ the gluten, shutting down my digestive system and my immune system
  • side effects include; bloating, too much pooping, too little pooping, nausea, fatigue, stomach aches, indigestion, farting etc.

If you think you may have coeliac disease then go to your doctor and basically demand a blood test for it. I didn’t have a clue about coeliac until one day I had just had enough of having to rely on hot water bottles to get me through the day, so I went to the doctor and pleaded with them to help me.

Thankfully my doctor that day suggested a blood test for coeliac disease and lactose intolerance. Later I had to have a gastroscopy (a camera down my throat and into my stomach) to confirm it, as well as an X-Ray to check my bones (my undiagnosed coeliac disease had caused a lack of vitamin D) and I was also diagnosed with osteopenia (the not-quite version of osteoporosis).

At the moment, I can’t remember the last time I had a gluten attack. It’s been nice.

I do however miss doughnuts, like A LOT. Jam filled ones.

5 Comments

  • Bexoxo says:

    It must be terrifying to go out to eat, not knowing what exactly could be in your food. I don’t like cheese, so I ask for my meals to not have any, and about 50% of the time, it still has cheese. Sometimes I just pick it off, sometimes I ask for a new dish and get the eye roll, but the servers don’t know me; I could be lactose intolerant.

    I recently read an article someone wrote about asking for a diet coke at a movie theater and was given regular coke out of spite from the employee. The movie goer had diabetes and suffered sever ulcers that were triggered if she ingested regular coke. Servers need to realized that do their job incorrectly can mean life or death in some cases.

  • Gloria says:

    I don’t want to downplay your symptoms in any way and it must be horrible to live with, but all I will say here is that I know of cases of ‘incurable, genetic and life long diseases” being cured,. Incurable can be cured, with the right help. It happens in the alternative field a lot. For some examples, you can look at eftuniverse.com and look up the case histories. This is just one source.

    Most doctors don’t know this because they are not trained to look at all information (and I don’t mean to be disrespectful of doctors either) but their training is limited. If you find an enlightened doctor, he/she will have investigated many sources of healing and they will know that this is true. Dr. Mercola is one of them, also Dr. Josh Axe, Dr. Russell Blaylock, Dr. Christiane Northrup and I could go on and on. Brilliant doctors out there who can back up what i’m saying. Hoping it helps. xx

    • Lauren says:

      Maybe one day I’ll be able to look into the alternative field, see if it is indeed possible! Thank you for the recommendations 🙂 x

  • Quinn says:

    Okay obviously gluten-free donuts need to be a thing. A friend of ours owns a gluten-free bakery in Dublin and it’s very popular! I know she does some sort of donuts although I don’t know if she does jam-filled ones….

    http://www.antoinettesbakery.com/

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