Updated 1st October 2024
One of the main reasons why it can be so hard to pinpoint a coeliac disease diagnosis, is that there’s apparently over 200 known symptoms for this serious autoimmune condition. Also, to achieve an accurate test result for coeliac disease, you need to have been including gluten within your diet six weeks prior to being tested.
The symptoms I experienced prior to being diagnosed with coeliac disease, was a sore cracked mouth (right in the corners, making it really painful when I opened my mouth wide to eat) and a low, (but not hugely so) iron count. And in hindsight, I also experienced tiredness that left me feeling wiped out. The tiredness episodes generally happened after eating sandwiches for my lunch, and I’d feel so tired, that I could have quite easily laid my head on the desk and had a little snooze.
Thankfully there were two factors that aided my quick coeliac disease diagnosis. The first was the keen eye of my GP. He was superb, and completely on it when it came to coeliac disease, as two members of his family had the condition and a few years later he also tested positive for CD. The second reason I feel I had a head start with getting a speedy diagnosis, was because in 2003 a gluten free diet was not encouraged; unless you had coeliac disease of course. So therefore it had never crossed my mind to reduce or remove gluten from my diet.
People living with undiagnosed coeliac disease may have multiple symptoms, one or two, or none at all. That is why family screening for the condition is crucial and should still be carried out even when no symptoms are displayed. The CD screening process should also be repeated periodically. In Australia, you can print out a letter from the Coeliac Australia site. This letter can then be taken to the Doctor to request a test when a family member receives a coeliac disease diagnosis.
The Coeliac society in Ireland are also doing great work in trying to help identify more undiagnosed coeliacs. They’re now encouraging GPs to tick the coeliac disease test box as routine when they order blood tests, even if the symptoms don’t seem directly related.
I have checked out reputable sites to give you a run down on some of the most common symptoms of coeliac disease. I’ve also added additional ones that I’m aware of:
- Recurring abdominal bloating and pain
- Chronic diarrhoea/constipation/excessive wind
- Irritable bowel syndrome symptoms (all bowel related conditions must be ruled out via testing before an IBS diagnosis is confirmed)
- Nausea
- Vomiting
- Decreased appetite
- Recurring mouth ulcers
- Pale sores inside the mouth
- Tooth discoloration or loss of enamel
- Liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
- Weight loss (but not always, some people gain weight)
- Pale, foul-smelling stool (which often float and can remain in the water even after flushing)
- Iron, vitamin B12, or folic acid deficiency
- Anaemia that does not respond to iron therapy
- Fatigue
- Failure to thrive or short stature (commonly in children)
- Delayed puberty
- Pain in the joints
- Tingling numbness in the legs
- A skin rash called dermatitis herpetiformis (DH)
- Unexplained infertility, recurrent miscarriage
- Osteopenia (mild) or osteoporosis (more serious bone density problem)
- Peripheral neuropathy
- Neurological (nerve) problems such as ataxia (loss of coordination, poor balance)
- Psychiatric disorders such as anxiety and depression
- Hair loss
- Headaches
A gluten free diet after being diagnosed with coeliac disease
Currently the only treatment for coeliac disease is a strict lifelong gluten free diet, which will lead to small bowel healing, resolution of symptoms and a reduction in the long-term risk of more serious health complications.
Following extract from Coeliac Australia website: “Symptoms can vary considerably in coeliac disease, everybody with the condition is at risk of complications if they do not adhere strictly to treatment with a gluten free diet. There is no correlation between symptoms and bowel damage so even if you are asymptomatic (you have no obvious symptoms), damage to the small bowel can still occur if gluten is ingested. This means everybody with coeliac disease, irrespective of the severity of their symptoms, needs to adhere strictly to a gluten free diet.”
Credit for the information I’ve shared within this post goes to:
University of Chicago Celiac Centre
One of the main reasons I started writing my blog was to help raise awareness about coeliac disease and encourage people to get tested if there was a shred of doubt that they may have the condition. To help more people get diagnosed, it would be great if you are able to share in the comments below, how you were diagnosed with coeliac disease and what symptoms you displayed. Or maybe you had no symptoms at all, but received a diagnosis after being routinely tested because another family member had the condition? Would love to hear your story!
For now,
Liz x
Thank you for another very helpful blog. It’s reassuring to know that others share these strange symptoms. All my symptoms I thought were completely unrelated to each other until I cut out gluten. I had the low iron, cracked corners of my mouth, tiredness, the odd bowel trouble but nothing terrible, blisters all over me and a stillbirth. The strangest symptom was blepheritis on my eyes. Itchy flaky eye lashes that I’d had since I was a child and it cleared up after 2 days! I have polycystic kidneys and my kidney function improved by 30%
After all this, my Dr at the time still didn’t test me! It was a long time for my diagnosis 🙄
Thank you so much Bron for taking the time to share your own personal experiences and symptoms that lead you to your coeliac diagnosis. I’m so sorry you had to go through what you did before discovering you had coeliac disease.❤️xx
I was diagnosed at age 16 with IBS (I am now 66). All my life I have had an issue with “diarrhoea” – I say diarrhoea, although my bowel movements are not loose, but many times daily. 8 years ago I was diagnosed with coeliac disease following many investigations. As well as many daily bowel movements I suffered extreme fatigue. Initially going gluten free was a revelation in that my bowel movements decreased and I felt wonderful. However, this has not been maintained and consequently I have had many more tests and been diagnosed with diverticular disease two years ago. From being in contact with others I have discovered that often one bowel condition co-exists alongside other gut issues, not necessarily related to being older. I am currently awaiting a surgical opinion to see if removal of my sigmoid colon would benefit me. I think I have just been unlucky, but living with coeliac disease is a doddle compared to the diverticular disease!
Thank you so much for taking the time to share your coeliac symptoms. Really sorry that it took such a long time to establish it was coeliac disease. But it sounds like you embraced the diagnosis at that point as you were able to feel better. It’s really unfortunate that you then had diverticular disease to contend with as well. I have everything crossed for you, that they can offer a good solution to your condition and you feel well again really soon. Take care. Liz x
Really interesting reading, I too suffered from an awful lot of the symptoms listed as well as giddy ness, severe headaches and terrible cold sores ( which have almost gone since not eating gluten). Hindsight is a wonderful thing, I would never have linked my symptoms to something like CD. I feel 99% better since changing my diet, it’s worth the sometimes inconvenience just to feel so much better.
Thank you so much for reading my post and taking time out to share the symptoms you experienced before being diagnosed with coeliac disease. The information that you have shared will be of great help to others who visit this page.
Lovely to hear that you are feeling so much better since being diagnosed and following a gluten free diet. Take care. Liz x