Unusual Symptoms of Coeliac

I have been coeliac now since 2014 but still sometimes I find myself thinking about my symptoms before diagnosis, especially when it comes up in conversation about other peoples symptoms.

I didn't have your stereotypical coeliac symptoms which is probably why it took all my life to finally find out gluten was the problem all along.... and technically I'm still not 100% diagnosed as my gastroscopy was "borderline" and doctors just said "let's just class you as Coeliac"

The standard symptoms that always seem to be the "first sign" of coeliac is weight loss, diarrhoea and bloating, but these aren't the necessarily the only signs it could be coeliac. It could actually be almost the reverse with weight gain and constipation.

In children failure to thrive is often the first symptom, they just fail to gain weight or be healthy but also behavioural issues are a fairly common sign of Coeliac in kids too.

However, while these issues are often recognised as potential signs many people don't seem to get the typical symptoms which can be a reason why many people take years to be diagnosed. Quiet frankly, if you display uncommon symptoms, doctors aren't going to think to check for it.

For me I got pain under my ribs on the right side, for around a year this pain would not go, I got everything prodded, poked and scanned more than once with everything being clear. Yet I had a pain so intense I couldn't sit down for long. I lost weight...not as a symptom of coeliac but because I couldn't sit still I had to be constantly on the move, it was the only thing that stopped the pain. I couldn't work because I couldn't sit at my desk longer than 5 mins!

My mum also had less than typical symptoms, she isn't diagnosed but went gluten free as a last straw. She had lost 6 stone and was below BMI, purely because of the fact she couldn't hold any food down, sometimes she could hold down soup but not always. Doctors prescribed Ensure drinks which again she could only sometimes hold down. Tests all came back fine except cysts in her liver, there was no reason why she was unable to eat but she couldn't. She would just bring everything back up or on the worst days, pure bile (she had gallbladder out years before).

Shortly after they found she had a slow sphincter in her oesophagus, part of an answer but it didn't solve anything. It was around the same time I got diagnosed and was feeling better, she'd had enough and both I and a doctor suggested trying going gluten free (after she told them about me). Within 2 weeks she was holding down solids again. Doctors still can't explain why she got those symptoms but she did. And to boot the acid heartburn she had suffered with for years went too.

While I was thinking about all this the other day, I decided to ask on my Facebook page if anyone else had unusual symptoms before diagnosis. The amount of different symptoms that eventually lead to Coeliac diagnosis and symptoms then clearing up once going gluten free was kind of amazing and scary.

These are just some of the symptoms mentioned that lead to Coeliac diagnosis:

Acid burps (which I got too!)

Headaches and migraines

Pain under ribs right side (like me, who knew it wasn't just me with that!)

Anaemia

Constant colds or congestion

Gallstone type symptoms (being told it was gallbladder issues)

Bed wetting (in children)

Rashes - from small bumps to psoriasis and eczema

Depression and anxiety

Mouth ulcers

Numb fingers and/or hands

Oesophageal problems

Aching joints

Butterflies or burning in the stomach

Fainting

Chronic nausea (to the point of being bed bound in some cases)

Behavioural issues (usually in kids, can be mistaken for ADHD)

Heart palpitations

Neurological symptoms including brain fog and constantly falling over (with some being checked for MS too)

Hives

Restless legs

I am not a doctor, or in the medical profession but these came up a lot off other coeliacs so if you experience them it maybe worth questioning if it could be Coeliac as it isn't always obvious symptoms that bring it to light. It is quite bizarre how some of these symptoms can lead to a diagnosis of an issue that usually causes digestive issues.

Remember if you think you might have Coeliac always talk to a medical professional and continue to eat gluten all through the diagnosis stage to make sure you get an accurate result.

Did you have any odd, or uncommon symptoms before diagnosis? Let me know in the comments.