- Reference Number: HEY1468/2024
- Departments: Dietetics
- Last Updated: 31 August 2024
Introduction
This leaflet has been produced to give you general information about your treatment. Most of your questions should be answered by this leaflet. It is not intended to replace the discussion between you and your dietitian, but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.
What is Coeliac Disease?
Coeliac disease is an autoimmune condition estimated to affect 1 in 100 people in the UK. When someone with coeliac disease eats gluten, it causes the body’s immune system to attack and damage its own tissues. The tissues that can be damaged by consuming gluten is the lining of the intestine, particularly the finger-like villi. This often leads to nutrients from food not being absorbed properly.
Why do I need a gluten free diet?
Coeliac disease is different from food allergy or intolerance. The only treatment for coeliac disease is a strict, life-long, gluten free diet. Gluten is a protein found in wheat, barley and rye. These cereals are commonly used in breads, pasta, breakfast cereals, cakes, biscuits and pastries.
You should start the gluten-free diet as soon as you receive the diagnosis of coeliac disease.
Products that specifically say they are gluten-free are safe to eat. You will usually find them on the ‘free-from’ aisle in the supermarket. Gluten-free foods will also be available elsewhere in the supermarket among the different sections. Foods that do not contain wheat, barley and/or rye as part of their ingredient list are safe to eat.
The key to having a gluten-free diet is by becoming a good label reader.
Can there be any complications or risks?
People with undiagnosed coeliac disease or those who are not following a strict gluten free diet are at a higher risk of long term complications, including iron deficiency, vitamin B12 or folate deficiency, osteoporosis, faltering growth or malnutrition, ulcerative jejunitis, and intestinal malignancy.
What can I expect from my appointments?
As coeliac disease is a diet-related condition, you/your child will be mainly managed by the dietetic team. However, you should expect a one-off appointment with the doctor post diagnosis. After that, you/your child’s care will remain under the paediatric gastroenterology service but routine appointments with the gastroenterologist will no longer be offered. If further appointments with the doctor are needed at any point, they can be arranged without the need of a new referral.
Your appointment with the gastroenterologist may be prior or after your initial dietetic appointment.
First dietetic appointment
You should expect an appointment (face-to-face or video) with a paediatric dietitian within 6 to 8 weeks post diagnosis. On this appointment, the dietitian will:
- help you understand coeliac disease and how to manage it better;
- assess growth and any ongoing symptoms;
- discuss in more detail the gluten-free diet and suggest suitable gluten-free food alternatives, taking into account your food preferences;
- help you to include all the necessary nutrients such as energy, fibre, vitamins and minerals (such as calcium and iron) in your diet;
- start you on gluten-free prescription (bread and/or flour) if you wish;
- answer your questions and address any other problems you may have.
What happens at the annual review?
You will be booked for an annual review every 12 months with the dietitian. You will be invited to have blood tests done 2 to 4 weeks prior to your dietetic appointment and it is very important that you attend it. On your annual review appointment, the dietitian will:
- assess growth and any ongoing symptoms;
- review your annual blood results;
- provide support with the gluten-free diet;
- write to the gastroenterology consultant for a medical assessment if there are any clinical concerns upon review;
- answer your questions and address any other problems you may have.
Useful Information
Whilst awaiting your dietitian appointment, the ‘newly diagnosed coeliac disease’ webinar below will provide detailed information about how to start a gluten-free diet. The webinar is free of charge. It can be shared with family and friends and watched as many times as required. It is also available in shorter 8 to 10 minute clips.
Webinars on Coeliac Disease – patientwebinars.co.uk
If you want to do some reading on coeliac disease before you see the dietitian, check out the Coeliac UK website. Coeliac UK is the main charity that supports people with coeliac disease in the UK. We would advise you to consider joining Coeliac UK which has a wealth of information to support people with coeliac disease. The details can be found below:
https://www.coeliac.org.uk/join-us/membership/
Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Dietetic Department on tel: 01482674490
General Advice and Consent
Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.
Consent to treatment
Before any doctor, nurse or therapist examines or treats your child, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to your child. You should always ask them more questions if you do not understand or if you want more information.
The information you receive should be about your child’s condition, the alternatives available for your child, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:
- you must be able to give your consent
- you must be given enough information to enable you to make a decision
- you must be acting under your own free will and not under the strong influence of another person
Information about your child
We collect and use your child’s information to provide your child with care and treatment. As part of your child’s care, information about your child will be shared between members of a healthcare team, some of whom you may not meet. Your child’s information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.
We may pass on relevant information to other health organisations that provide your child with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your child’s doctor, or the person caring for your child.
Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about your child. For further information visit the following page: Confidential Information about You.
If you need information about your child’s (or a child you care for) health and wellbeing and their care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.
