Understanding What Triggers Coeliac Disease

Yesterday, as I was chomping my way through an M&S gluten-free tiger roll at a friend's picnic, I was asked a familiar question: what triggers coeliac disease?

The frustrating answer about coeliac triggers is that they can be complex and varied. It's not like asking how someone gets pregnant (although possibly less likely to make someone blush). And it doesn't necessarily happen as soon as you start eating gluten (e.g. when weaning a baby). So what causes this autoimmune disorder to activate?

If you're not already aware, coeliac disease affects the small intestine and is triggered by the ingestion of gluten, a protein found in wheat, barley, and rye.

But we need to back up a little here. Not everyone who has coeliac disease has had it their whole life. For me, mine was activated at the age of 20, and scientists still haven't come up with a definitive reason. Answers such as a stressful event (e.g. breaking a bone, taking exams or giving birth) are put forward, but it's still an area that's being researched. More on this later.

So if you can possibly lose your inner detective and accept that coeliac disease, once triggered, is here to stay, we need to look at the second issue: why does being "glutened" provoke different reactions in some and, more importantly, why are those reactions sometimes far more exaggerated than normal?

Reactions include many different symptoms ranging from fatigue to diarrhoea, mouth ulcers, dizziness, bloating, vomiting and more. Often, people have a standard symptom they know they're going to get when they've had gluten. Mine is usually a loo dash with severe abdominal pain. But it's not always the same.

I'll give you an example. A few years ago before doing a big event, I'd gone out to a new restaurant and they'd served me gluten in rice. Yes, rice. They'd added spaghetti (of all things) and a chicken stock seasoning that both contained gluten.

I was beside myself with mortification. The event I had was, ironically, talking about avoiding gluten. How would I get up on stage if I had to keep dashing to the loo?

But here's the weird thing: despite knowing I'd been exposed to gluten, I didn't have a reaction.

It's the same for many of my clients. They'll ask me why their symptoms have changed, either from something extreme to minimal or the opposite. Some will have been diagnosed as silent coeliacs (where they have no known symptoms but an endoscopy shows they have damage to the villi in their intestine) and then, after going on a strict gluten-free diet, if they accidentally have gluten (or risk eating gluten because they've never known any problems with it), they suddenly find they have a physical reaction.

So what's going on? One answer is that triggers go beyond just gluten exposure. So let's take a look at the various factors that can provoke or worsen symptoms, helping those of us affected to manage our health in a better way (but not by going on a crazily strict diet, like giving up what I consider a daily essential: chocolate).

Identifying Common Coeliac Condition Triggers

Understanding what triggers short-term symptoms of coeliac disease is crucial.

While accidentally eating gluten is the primary trigger, other factors can influence the severity and onset of symptoms. These include:

• Dietary negligence: Deliberately consuming gluten-containing foods on a regular basis, such as bread, pasta, and biscuits.

• Infections: Certain viral or bacterial infections may activate the immune system, worsening the condition.

• Stress: Physical or emotional stress can exacerbate symptoms.

  
  

Now you may scoff at the first point above. If someone deliberately eats gluten then surely they have to expect the consequences. And if you're well-educated then it's obvious, you might think. But just like a smoker knows a cigarette isn't good for their health and they may suffer because of it, a coeliac may have great difficulty avoiding gluten, particularly if they're on a low budget.

So let's look at what triggers them deliberately to eat gluten. Firstly, it may be they want to join in with everyone else. If you're coeliac yourself you probably know how unpleasant it is to have to say no when someone else has gone to the trouble of providing food. Parties or gatherings of any kind can be awkward.

Or it may be they simply can't deny themselves a Greggs sausage roll or a Miss Millie's cookie. Here, I'd suggest looking at what triggers the thought behind it. I had a colleague who had a weakness for pizza. He just couldn't help himself...until he realised the trigger behind his desire. It was the image of a pizza slice being lifted and all the stringy cheese that came with it (you've probably seen this action shot of pizza many a time). So what could he do?

He couldn't avoid the advert because they were everywhere - on TV, at the cinema, on social media, billboards and also as he walked down the street past posters in pizza place.

So he had to think of another way to stop his desire. And he chose a context reframe: instead of seeing lovely stringy cheese, he forced himself to imagine the cheese was maggots, crawling down the pizza slice. And by visualising this every time he saw pizza, he was able to avoid eating gluten. So if you're coeliac and you're having similar issues, I recommend trying something similar. By recognising your triggers, it becomes easier to avoid or minimise exposure.

Do you see cheese...or maggots?!

How Diet Influences Coeliac Condition Triggers

Diet plays a crucial role in managing coeliac condition triggers. Gluten is the main culprit, but hidden sources of gluten can be found in processed foods, sauces, and even some medications. Here are practical tips to avoid dietary triggers:

1. Read labels carefully: Look for gluten-free certification and avoid ingredients like malt, wheat starch and barley unless it specifies the gluten has been removed (e.g. gluten-free wheat starch).

2. Choose naturally gluten-free foods: Fruits, vegetables, meat, fish, rice, and potatoes are safe options as long as they're not coated in anything (e.g. batter or breadcrumbs) or on a buffet where the same tongs are being used for everything...which brings me to point number 3:

3. Avoid cross-contact: Use a separate toaster, don't share a butter knife and clean surfaces as though you were competing against Mrs Hinch.

4. Plan meals ahead: Preparing meals at home (particularly lunch) reduces the risk of eyeing up gluten-filled treats when you're in a place like the work or school canteen and in a hurry.

   
   

Adopting these habits can significantly reduce the risk of triggering symptoms and improve overall well-being. I don't know about you, but I'm definitely not my best self mentally if I'm suffering from the effects of gluten, and it's wonderful to feel the freedom of a healthy tummy.

One of my latest gluten-free creations with rice noodles (also known as 'glass' noodles)

What Are The 5 Stages of Coeliac Disease?

Understanding the progression of the coeliac condition can help with early diagnosis and treatment. So if these seem familiar in either your own symptoms or those of a loved one, it's time to book an appointment with the docotr. The five stages typically include:

1. Genetic predisposition: It's thought that most coeliacs carry specific genes (HLA-DQ2 or HLA-DQ8) that increase susceptibility. It's estimated that children who have a coeliac parent have a ratio of 1 in 8 girls and 1 in 13 boys who'll also get the condition.

2. Environmental trigger: Exposure to gluten initiates the immune response (in other words, if you never ate gluten your whole life, you'd never get the symptoms of coeliac disease).

3. Immune activation: The body produces antibodies against gluten and intestinal tissue.

4. Intestinal damage: The small intestine’s villi become inflamed and flattened, impairing nutrient absorption.

5. Symptom manifestation: Symptoms such as diarrhoea, fatigue and weight loss may appear, although increasingly people are finding they get neurological reactions such as migraines or brain fog. There are so many different symptoms it's important not to think, "I haven't lost weight or got diarrhoea so I can't be coeliac".

   
   

Early recognition of these stages allows for quick intervention, preventing long-term complications (which include issues such as osteoporosis).

Medical chart illustrating stages of intestinal damage in coeliac condition

Other Factors That Can Trigger or Worsen Symptoms

Besides gluten, several other factors can trigger or worsen symptoms in people with coeliac condition:

• Infections: Gastrointestinal infections can increase intestinal permeability, allowing gluten peptides to provoke a stronger immune response.

• Hormonal changes: Pregnancy, menstruation or menopause may influence symptom severity.

• Medications: Some drugs can irritate the gut lining or interact with gluten sensitivity.

• Stress and lifestyle: Chronic stress and poor sleep can weaken the immune system, exacerbating symptoms.

  
  

If you're looking at the above points and wondering how on earth you can reduce stress, take a look at my box breathing programme here. It's free to download and is great for helping to create calm.

Practical Recommendations for Managing Coeliac Condition Triggers

Managing coeliac condition triggers requires a comprehensive approach, which is made a lot easier for all my members. Here are actionable recommendations:

• Strict gluten avoidance: Follow a gluten-free diet meticulously.

• Regular medical check-ups: Monitor nutrient levels and intestinal healing.

• Educate yourself and others: Awareness helps prevent accidental gluten exposure.

• Support networks: Join my coeliac membership group for monthly webinars and a lovely coeliac community.

• Stress management: Practice relaxation techniques such as box breathing.

  
  

By implementing these strategies, you can work towards leading a healthier, symptom-free life.

For more detailed information and personal stories about living with coeliac disease, read my book on coeliac disease: Are You There, Gluten?