Coeliac & gluten


+What is coeliac disease?

Coeliac disease is a genetic autoimmune disease where the body's immune system is triggered by the protein gluten.  It misidentifies gluten as a threat and attacks, damaging healthy gut tissue in the process.  Over time this damage can become very serious, potentially inhibiting your body's ability to absorb the nutrients it needs and leading to other complications.  Symptoms can be triggered by ingesting even tiny amounts of gluten, so a strict gluten free diet is the only treatment.

The symptoms of coeliac are very similar to those of IBS, IBD, SIBO, and other GI conditions and include nausea, abdominal pain, bloating, and diarrhea.  In the UK only 24% of people with coeliac disease are diagnosed, and the average length of time taken from first onset of symptoms to diagnosis may be as long as 13 years.  If you have any of the symptoms of coeliac disease please speak to your doctor sooner rather than later.

You should also speak to your doctor or a registered dietician before deciding to go gluten free, especially if you have not yet been tested for coeliac, as following a gluten free diet before a test can lead to an inaccurate result.

+How many people have coeliac disease?

Current meta-analysis of research shows that worldwide around 1 in 100 people has coeliac disease.  Its prevalence varies significantly by geographical location since it is a genetic disease.

In the UK that translates to around 670,000 people living with coeliac disease.  Only about 24% of them are diagnosed, however, meaning a whopping 500,000 people are suffering needlessly.  If you think you might be one of these people, please go and see your doctor for a blood test sooner rather than later.

+How do I know if I have coeliac disease?

Symptoms vary between people and can range from very mild to very severe.  Unfortunately they also overlap significantly with symptoms of other diseases like Crohn's, IBS, or intolerance to FODMAPs such as fructan or lactose.  Symptoms such as lethargy can also be confused with stress, depression, or even ageing.

This is partly why only about 25% of people in the UK who have coeliac disease are diagnosed; an estimated 500,000 people in the UK have it but don't know.  If you have any symptoms that you can't explain, or if you think you might have coeliac, please speak to your doctor or a registered dietician right away.

You might also like to try this online screening questionnaire from Coeliac.org.uk, although of course this is not a diagnosis and is not medical advice.

+Is it possible to be coeliac at the same time as having other dietary requirements?

Yes.  People with coeliac disease are more likely to develop lactose intolerance, which can be treated by avoiding lactose, but it is also possible to have any number of other allergies or intolerances at the same time.  That's not to say that everyone does, but it is possible.

Whether you only have coeliac disease or you have other dietary requirements as well, or you suspect that you may have one or more requirements, it is really important that you talk to your doctor or a registered dietician to make sure you have the right information for your needs.

+I think I might be coeliac but I don't want all the hassle of getting tested. Can't I just go gluten free?

We understand that it can be daunting trying to figure out why you don't feel well, but speaking to your doctor or a registered dietician really is the best and safest place to start, and you should talk to them before making any major dietary changes, gluten free or otherwise.

Since the symptoms of coeliac overlap with so many other conditions it's possible that you might not be coeliac, meaning you could go to all the effort of going gluten free only to find it doesn't help.  You only need to get tested for coeliac once, but it is important to get tested before changing anything in your diet as this can make your test results inaccurate.   Wouldn't it be better to know for sure?

+Is it possible to be sensitive to gluten without being coeliac?

Yes, non-coeliac gluten sensitivity is becoming an increasingly recognised condition.  It is characterised by the same symptoms as coeliac, but no antibodies are produced (so a coeliac test will come back negative) and the bowel lining does not appear to become damaged.

Non-coeliac gluten sensitivity is a new area of study and more research needs to be done to understand what it is, who might be affected, and why.  The jury is still out on whether gluten is the actual culprit, whether it may actually be FODMAP sensitivity (since all gluten-containing grains are also high FODMAP), or whether proteins found in wheat other than gluten are to blame.

Remember that it is always best to talk to your doctor about any symptoms you have.  You should also consult your doctor or a registered dietician before deciding to go gluten free, especially if you plan to be tested, as following a gluten free diet before a test can lead to an inaccurate result.

+Can I be cured of coeliac?

Unfortunately no.  Following a strict gluten free diet is the only treatment option available.

The range of gluten free options is always increasing though, and awareness of the condition is also improving.  When shopping on Fodpod remember to check the gluten free filter option to help you find products that are suitable for you, and always read the label.

+Do you grow out of coeliac?

This is a common myth.  Coeliac disease is a genetic auto-immune disease so if you have it then it's with you for life.  Following a strict gluten free diet is the only treatment option available.

+How do I know if something contains gluten or not?

Gluten is found in wheat, barley, and rye.  Anything containing these grains will contain gluten so should be avoided by people with coeliac disease.

Gluten may also be introduced by cross contamination.  Cross contamination is when food containing gluten leaves traces of gluten on the equipment with which it was prepared; these traces of gluten then enter any food subsequently prepared with the same equipment.  This can happen both at home and in commercial and industrial environments, which is why some products carry disclaimers such as "may contain traces of gluten" and may not be suitable for those on a gluten free diet, even though none of the ingredients themselves contain gluten.

By law any food that is labelled as gluten free is required to have been tested and fall below the 20 parts per million threshold.  Labelling is voluntary.  In the UK, Coeliac UK operates a gluten free testing and certification to help you shop with confidence.  Look for the crossed grain symbol.


Coeliac.org.uk


GFCO.org



To help you identify products while out and about, you might like to download one or both of Coeliac UK's apps, Gluten Free on the Move (for restaurants) and Gluten Free Food Checker (for scanning barcodes).

+ I'm supposed to be gluten free but I accidentally ate gluten.  What will happen? 

Any major dietary change will take time to get used to, and mistakes do happen, especially when it's all new to you.  Eating even small amounts of gluten should be avoided if you are coeliac, as the more times you eat gluten the more likely it becomes that long term damage will be done to the lining of the bowel.  If you have eaten some accidentally then you will just have to wait for the symptoms to pass.  Symptoms may set in within a few hours of eating gluten and may persist for up to several days, though this may depend on a range of factors.

The most important thing is to try your best to eliminate your exposure to gluten.  It's a good idea to speak to your doctor or a registered dietician for help with managing your condition.

+ Where can I learn more?

For more information or for help and support with coeliac disease be sure to speak to your doctor or a registered dietician. You may also like to read the following resources:

Coeliac.org.uk

Isitcoeliacdisease.org.uk - screening questionnaire

NHS - Coeliac disease

Beyond Celiac