Hidden signs you've got coeliac disease

Take a good look at this picture. Does she look ill?

Does this look like an undiagnosed coeliac?

Nope. Picture of health. She's the ultra-tanned happy gal who's clearly enjoying the benefits of America's drive-thrus including Dairy Queen, Taco Bell and good old Burger King.

Or is she?

Most of that sentence is true. But the part about being happy? Not entirely.

This was me in 1997. I'd been having on and off tummy pains for some time and been misdiagnosed as having cysts on my ovaries. It would take another 2 years before anyone would mention coeliac disease.

Back in the 90s, doctors tended to think of coeliac patients as ones who were wasting away. After all, if you’re not absorbing food properly then it tends to go right through you. Except for me.

I didn’t have chronic diarrhoea all the time. I might have been in pain but coeliac disease does such a good job of mimicking other problems no-one thought to do a simple blood test to check for antibodies. It would take multiple misdiagnoses (and an unnecessary operation under general anaesthetic) before I finally got my diagnosis (and my life back).

So if you (or a loved one) haven’t had the right answers yet, take a look at the symptoms below and see if you can tick any of them off.

Let’s start with the most common:

1. Digestive issues: diarrhoea, constipation, or (counterintuitively) both. I know that sounds odd but to put it bluntly, the constipation is caused by a blockage and then liquid seeps around the sides and...yup, that's how you get both diarrhoea and constipation.

2. Abdominal pain: hideous cramping in your tummy.

3. Bloating: feeling unreasonably full or bloated after eating, especially after consuming gluten-containing foods. (This happened to me regularly and I remember once thinking if I didn’t eat then the pain wouldn’t happen. Big clue.)

4. Fatigue: unexplained and/or persistent tiredness.

5. Weight loss: unintended weight loss despite a regular or increased appetite. (Although, obviously given the pic above, don’t take this as an absolute.)

6. Skin problems: skin rashes can be a symptom (e.g. a rash around the elbows).

7. Joint pain: unexplained joint pain or discomfort.

8. Mouth ulcers: mouth ulcers that keep showing up like a bad fairy.

9. Headaches: frequent and severe headaches or migraines.

10. Depression and anxiety: possibly one of the trickier symptoms of coeliac disease but totally understandable given what your body’s going through.

But what about the less common symptoms? Or the mysterious ones where instead of doing what happens to many coeliacs, you get the reverse (like me putting on weight rather than losing it).

1. Dental issues: I’ve had a number of clients who’ve told me their dentist was the first person to mention coeliac disease. Why? Damaged enamel can be caused by reflux, which sometimes happens to coeliacs who are eating gluten.

2. Neurological symptoms: Getting tingling or numbness in your hands and feet? Make sure you mention it to your doctor.

3. Osteoporosis: It’s often one of the reasons elderly people suddenly discover they have coeliac disease. Not absorbing calcium properly can lead to weakened bones and an increased risk of fractures.

4. Infertility/miscarriage: This is such a sad sign of coeliac disease (as the actor Sharon Stone discovered). If it helps, once you follow a strict gluten-free diet you shouldn’t have further coeliac-related fertility issues.

5. Anaemia: Feeling dizzy? Been told it’s because you’re vegetarian? If you're sure you're getting enough iron, get the doctor to do a blood test; you need to know you’re absorbing nutrients properly.

Now this isn’t a check-list for coeliac disease; there are far more symptoms that can present themselves and we’d be here for a l-o-o-ng time if I were to list even half the ones I’ve come across. But the important thing is you’re aware of coeliac disease so you can go to the doctor and make sure you get the right tests. After all, the quicker you can get an accurate diagnosis, the quicker you can get on with your life.

A much happier me getting on with my life

But remember: you must be eating gluten for current tests to be accurate. Blood tests will be done first (98% accuracy) and then a biopsy, which will determine 100% whether you are coeliac or not.

Want to know more about getting tested for coeliac disease? Check out my blog post here on endoscopies.