What to do if you think you have Coeliac Disease
Coeliac disease affects 1-2% of the population & it’s thought up to 80% of people are living with coeliac disease and don’t know it.
Let’s deep dive into what is coeliac disease, who’s at risk, symptoms, what to do if you suspect you have it, dietary management & what happens if you don’t follow dietary recommendations.
What is Coeliac Disease?
It’s an autoimmune response, so not an allergy or intolerance to the exposure of protein, gluten. Our small intestine, where we absorb nutrients such as iron & calcium are lined with something called microvilli (they look like fine hairs or fingers). These little projections (see bottom left image) are where our digestive enzymes live. When someone with coeliac disease eats food which contains gluten, these little hairs get damaged (see bottom right image), therefore affecting how well we breakdown & absorb nutrients-for everyone else, this doesn’t happen, so you can happily continue eating gluten containing foods.
Image: Coeliac Australia
Who’s at risk?
Having a family member with coeliac disease you risk increases by 10-20%
Having an autoimmune condition such as Hashimoto, Addison’s, Sjogren’s
Type 1 Diabetes
Immunoglobulin A deficiency
Dermatitis Herpetiformis - this looks like blistering or itchy skin (see symptoms below)
Other conditions such as Down or Turner’s syndrome
Signs & Symptoms of Coeliac Disease
Dermatitis Herpetiformis
IBS - like symptoms (bloating, abdominal pain, unusual bowel habits)
Recurrent miscarriages &/or unexplained fertility issues
Constantly tired/fatigued
Iron deficiency or Anaemia
Weight loss (when not trying to lose weight)
Early onset osteoporosis or weak/brittle bones (low bone mineral density)
Some people with coeliac disease don’t have any symptoms (called asymptomatic), which is why it’s thought up to 4 out 5 people are living with coeliac disease don’t know it!
What to do if you think your have Coeliac Disease
Go to your doctor. Below is an easy to follow flow chart of the process. If you include gluten in your diet (eating it daily for the past 6 weeks, not just sometimes) you can get an antibody blood test & small intestine biopsy. If your antibody test results is positive, then you’ll need to have a biopsy of the small intestine. This will identify if there’s damage to those fine hairs I mentioned earlier. A positive antibody test alone can’t diagnose coeliac disease, it’s used to guide the process, the biopsy is the only medicate way to confirm a coeliac disease diagnosis.
But what if you don’t eat gluten or cut it out recently?
You can have a gene test to see if you carry the HLA-DQ2/8 gene. If it’s negative, it’s deemed you don’t have coeliac disease so you’ll need to see a dietitian who specialises in food sensitivities or digestive problems for further investigation as to what is causing you problems.
If the gene test comes back positive, you’ll need to do a gluten challenge followed by the antibody test above.
>>>Important>>> A positive gene test doesn’t mean you have coeliac disease, your doctor may routinely test to see if you carry the gene, this doesn’t mean you have coeliac disease, it’s simply that you carry the gene, only ~1 in 40 with the gene develop coeliac disease, if you develop symptoms, you will need further investigation.
The process of diagnosing Coeliac Disease
Dietary Management of Coeliac Disease
Must stick to a strict gluten free diet. SWAPPING all gluten containing grains for non-gluten containing grains. If you stop instead of swapping these grains for alternatives, it can make it difficult to get enough fibre which can cause digestive problems. This means reading food labels, gluten-free substitutes, knowing how to cook & prepare gluten free foods, knowing what foods to eat when socialising/travel, being aware of what foods contain gluten.
What’s happens if you Don’t Follow A Gluten Free Diet
The little fingers lining your small intestine will continue to be destroyed, which means, your body won’t be able to absorb nutrients. This can lead to nutritional deficiencies, particularly fibre, iron, zinc, vitamin B12, vitamin D & folate, increasing your risk of anaemia, osteoporosis & is linked to recurrent miscarriages & unexplained infertility.
Research has shown, even after following a strict gluten free diet, some nutritional deficiencies may continue so speak to your dietitian to assess the nutritional adequacy of your diet (1).
>>>DIETITIAN TIP>>>
For those with coeliac disease who have recently started eating a gluten free diet, you will find your probably lactose intolerant. This is because the lining of your small intestine where we breakdown and absorb lactose is damaged. If this is you, after 3 months of being on a gluten free diet, try lactose-containing foods again, your gut lining should have recovered, which means you should be able to digest it properly. In the interim, make sure your lactose-free products contain 120mg per 100mL calcium.
References
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071237/
