Coeliac Community Week: Day 2
Updated: May 13
Not talking crap
You're back. This means you can cope with abundant talk of flatulence, toileting and all things guts, or you're very lovely. Either way, thanks!
So yesterday, I got talking about coeliac disease being far more complicated than it may seem. Today I am going to delve into this more. There's going to be much less poop talk here, and more about the many unknown facts about this long term condition. Dull, I know, but stick with me. I'm going to hit you with some fact attacks courtesy of Coeliac UK, and yes, further personal post-diagnosis ramblings.
Aside from the more obvious, terribly embarrassing gastro atrocities mentioned in my last post, our lovely wheat-based enemy causes the following symptoms for it's sufferers:
Fatigue (extreme tiredness)
Skin issues - rashes and irritation
Depression and anxiety
Severe or persistent mouth ulcers
Irritable bowel syndrome (IBS) (in adults)
According to Coeliac UK, "It has been suggested that the chance of developing other autoimmune disorders is increased when diagnosis of coeliac disease is delayed". Coeliac disease itself is an autoimmune disease, and people with it have genes that predispose them to the condition. If you have one autoimmune condition, there is an increased risk of having another one.
Here are some other key conditions that are often secondary to coeliac disease:
Type 1 diabetes
Autoimmune thyroid disease
Down's and Turner Syndrome
Malnutrition and associated complications
Lymphoma and small bowel cancer
Gluten ataxia (walking balance, limb coordination, eye movements and speech)
Gluten neuropathy (decreased or loss of feeling, difficulty using arms, hands, legs and feet, tingling, numbness, burning and pain)
Gluten encephalopathy (cognitive issues such as significant headaches, memory loss etc)
There are of course, other associated issues, as with many autoimmune diseases. These are the bits doctors, dieticians and endocrinologists didn't tell me about, and don't seem to tell others about. I had to feel my way along, and this wasn't always easy. Trying to avoid Google diagnosis, but understand the other peculiar experiences was a constant joy I can tell you. Many of these issues were eventually connected with years of being undiagnosed, and things started to make sense. The most helpful professional I saw, was an expensive trichologist. Arguably, I gained an appointment for cosmetic reasons, but inevitably, it turned out to be the most lucrative health testing I have engaged in post-diagnosis.
Trial and error
There is research to support what is called 'Non responsive and refractory coeliac disease' which in a nutshell, means - you've gone gluten free, but your guts are still in flux. As your fluctuating levels of feeling 'generally unwell' continue, it is difficult when you're asked "are you sure no gluten slipped into your mouth?". Especially when you have been beyond careful about almost every mouthful, EVER.
There are some clear ongoing complications identified through years of trial and error. It has taken AGES to realise the connection between various health complications with what many consider simply avoiding bread. What's more, every health professional you speak to says: "you should feel fine now you're following the diet". I never had that "I feel wonderful" feeling post-diagnosis, and I haven't forgotten all about my glutenous battle. The list below is what has, and continues to present for me:
- Iron Difficiency
- Vitamin B12 difficiency
- Vitamin D Difficiency
- Joint and muscle pain
- Hair thinning
- Low mood
- Extreme weight loss (I stress this was a fair while ago!)
- Tooth decay
- Ulcers and oral trauma
- Irritable Bowel Syndrome (IBS)
Some extremes of the middle:
Less morbidity, more fluidity
Talking to other coeliacs has been very informative and reassuring. As GF'ers, we need to capitalise on opportunities to share our experiences, life hacks, small breakthroughs and big deals. In our five minute GP reviews and over-subscribed dietetic clinics, we don't have the chance to truly explore what the hard facts and hidden complications mean for us, and how we can werk them (sorry, more Ru there). I will explore some of the more personal aspects of the gluten 'gloom' list above over the course of this week. It's not all doom and gloom, trust me. But sometimes it's a bit on the serious side.
The take home message for today is...it's not just about avoiding the O.G's of beige that keeps you well as a coeliac. It's constant monitoring and topping up of your body's basic needs, and doing this WELL. Because if not, things can get REALLY complicated.
Thanks for reading
Having a swell time over the years: