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NOTES FROM A MEETING WITH A DIETITIAN

We were grateful for the time spent by a dietitian from North Tees and Hartlepool Trust in coming to our Meet Up in February to tell us more about the service and answer questions, both submitted beforehand from the facebook group, and asked at the time.  Here are notes from the meeting.

 

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She explained that patients could access a dietitian by seeking referral from their GP, specialist nurse or by their consultant depending on their local area. Dietitians often specialise in certain medical areas for example diabetes, coeliac disease, or paediatrics.

During Covid, dietitians had mainly done new/review appointments by telephone.

Patients do not have to be diagnosed with coeliac disease to be referred to a dietitian, can be referred/seen for lots of reasons.GP/referrer will know what services are available in their area for patients. Once referred to a dietitian the patients are triaged by dietetic team considering information such as clinical need. This ensures patients are seen by most appropriate clinician in most appropriate time frame.

If a patient has more than one condition, they can be referred to other specialist dietitians such as for diabetes or oncology to ensure they are given right advice by most appropriately qualified person.

Coeliac Disease:

Process for diagnosis, Blood test for coeliac antibodies and if positive, referral to gastroenterologist needed confirms the diagnosis (usually through biopsy taken from the small intestine. The dietitian described that in coeliac disease when gluten is ingested it can damage the small finger-like projections (villi) in the small intestine which can affect absorption of nutrients.There is often a link with anaemia for undiagnosed coeliac.

Coeliac Disease has Gut/non gut symptoms, some people do not notice any symptoms. In coeliac disease, even if a person does not notice any symptoms from eating gluten products doing so could still cause damage to lining of small intestine.

There is a link between poorly controlled/undiagnosed coeliac disease and lactose intolerance.

Patients with coeliac disease are recommend having blood tests, there is also recommendations in place around having vaccinations e.g. flu/pneumococcal. Bone health should also be considered. Referral for DEXA scan (bone density scan) may be suggested by Health care professional.

 

There are no specific guidelines/recommendations in place at present for people who are gluten intolerant but do not have confirmed coeliac disease.

 

Coeliac disease can be hereditary.

 

Coeliac disease is a life-long condition and cannot be cured. The only treatment is following a gluten-free diet. Dietitian acknowledged is a huge lifestyle change for diagnosed patients and potential cost implications. Discussed that care needs to be taken to prevent cross contamination also e.g. good food hygiene, utensils, and crockery as well as equipment such as separate toasters. (or use of toaster bags)

Dietitian recommended keeping up to date with food/drink directory from Coeliac UK and reading labels frequently as manufacturing process/ingredients can change. Patients must be vigilant as many food manufacturers, restaurants and cafes make disclaimer’s such “may contain” or “made in a factory handling wheat products”.

 

Suzanne mentioned that the only place in Stockton certified by Coeliac UK is Pizza Express at Teesside Park, and it is not suitable for the group’s meetings. Suzanne mentioned that Elmwood has many items gluten free on its menu but does say “may contain”.

 

This website has useful information Reactions to Wheat | Allergy UK | National Charity

Members recommended places to buy gluten-free fish and chips which are available on certain days from Hartburn Fisheries, Norton Fisheries and Seabreeze Redcar.

 

Diet and Fibre

The dietitian gave details of the website for the British Diabetic Associationhttps://www.diabetes.org.uk/(note there is a link to diabetes and coeliac disease) https://www.diabetes.org.uk/search?q=coeliac&op=Search+Diabetes+UK#gsc.tab=0&gsc.q=coeliac&gsc.page=1  Coeliac disease and diabetes | Eating with diabetes | Diabetes UK , Type 1 diabetes - Coeliac UK and Coeliac disease and type 2 diabetes - Coeliac UK and other relevant websites where patients can find trusted relevant information to help their conditions to be added to the GFSOT website. The diabetic association have information about fibre in the diet. 

Coeliac UKhttps://www.coeliac.org.uk/home/  can give a lot of information too.

Calcium Deficiency/ High Cholesterol

Patients with coeliac disease or gluten intolerance are not at more risk of these conditions providing their coeliac disease is well-managed and following healthy balanced diet.

Patients with coeliac disease can be at higher risk for bone thinning conditions including osteoporosis.

Coeliac diagnosis

Gold standard of diagnosis: blood test (checking for tTG antibodies). If raised referral to gastroenterologist recommended and they may suggest biopsy to confirm diagnosis. Before this biopsy, they need to continue eating gluten products for at least one meal per day for at least 6 weeks to avoid false negative results. GPs advice can differ on this, but these recommendations are from British Gastroenterology Society/Coeliac UK.

Prescriptions

At present, only patients with confirmed diagnosis of Coeliac Disease are eligible for gluten free food on prescription at present. NHS England state bread and flour only. Speak to your GP re prescriptions. Members discussed that GPs differed in what products they would prescribe for patients and due to the products being expensive less and less products were being prescribed so it was possibly budget related. Suzanne said that this issue was being raised with Stockton Healthwatch about these discrepancies within the borough, to see what the situation is, and if anything can be done.

Hospital

Members were concerned that sometimes gluten-free information was missing from patient’s health records and health information was not readily available to clinicians.Dietitian unsure of how to update alerts on system/spine record. Suggested speaking with GP.

 

The carrying of a card or “Health Passport” or SOS necklaces was discussed and how medical information could be logged on a patient’s mobile telephone that was accessible in emergencies using ICE (in case of emergency)

 

Dietitian was sorry that members have not always had good experiences either with Health care professionals/availability of gluten free food on wards etc. She suggested that feedback/concerns could be raised separately or collectively to the Patient Experience Team, (sometimes known as the Patient Advice and Liaison Service (PALS).More information about this is at:

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who can be contacted at Telephone: 01642 624719, Freephone: 0800 092 0084, Monday to Friday, 9:30 a.m. to 4:00 p.m. or e-mail

• . She suggested that this could be added to the group’s Facebook page and website.

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Girls/Women with well controlled coeliac disease should experience no worse periods than those who do not. Speak with GP/health care professional if concerns re periods/menstrual cycle.

Private Dietitians

Members could ask for a referral to a NHS dietitian or seek out a dietitian privately. However, they should make sure that any private health professional was appropriately qualified and registered and ask for their registration number to check on their qualifications. It was noted that dietitians are revalidated every few years. In UK, The HCPC is regulatory authority.