{"id":3802,"date":"2022-05-03T11:47:20","date_gmt":"2022-05-03T10:47:20","guid":{"rendered":"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/coeliacpaediatric\/"},"modified":"2026-07-10T08:50:01","modified_gmt":"2026-07-10T07:50:01","slug":"coeliacpaediatric","status":"publish","type":"page","link":"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/paediatrics\/paediatricgastrointestinal\/coeliacpaediatric\/","title":{"rendered":"Coeliac (Paediatric)"},"content":{"rendered":"\n<p class=\"has-alert-red-color has-text-color wp-block-paragraph\"><strong><u>Coeliac Testing Issues<\/u><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><mark style=\"background-color:#ffffff\" class=\"has-inline-color has-alert-red-color\">PLEASE NOTE UPDATED ADVICE (18th June 2026) gives a new tTG-IgA range of negative &lt;4.5U\/mL due to a change in method, but please always follow the interpretative comments attached to the result.<\/mark><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Background<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Coeliac disease is common (affecting approximately 1% of the general population), but&nbsp;it&nbsp;is estimated that around two thirds of patients remain undiagnosed.<br>The condition is more common in those with:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>A positive family history (approx. 10% lifetime risk)<\/li>\n\n\n\n<li>Other autoimmune disease e.g. Type 1 Diabetes, thyroid disease (approx. 5% prevalence)<\/li>\n\n\n\n<li>Specific syndrome groups e.g. Down Syndrome, Turner, Williams\u2019 (approx. 5% prevalence)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">The management of coeliac disease in children &amp; young people (&lt;16years of age) across Lothian is Dietetic-led with Paediatric GI consultant input.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The Paediatric Coeliac Service is informed of all positive coeliac serology results directly from the WGH Biochemistry Laboratory.&nbsp; The dietetic team will then get in touch with you to inform you of the results and request a&nbsp;<strong>formal referral to the Paediatric Coeliac Service using SCI-GW<\/strong>. Following referral the family are contacted directly to arrange a supportive&nbsp;new patient consultation&nbsp;and discussion&nbsp;around diagnosis and plan further investigation and ongoing management.&nbsp;&nbsp;All patients with positive coeliac serology who are referred to the service must continue to eat adequate amounts of gluten&nbsp;<strong>and not to go gluten free<\/strong>&nbsp;until instructed otherwise by secondary care.&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Children and young people with existing coeliac disease can also be referred to the Paediatric Coeliac Service using SCI-GW.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Where the primary care team feels additional expertise is required, an \u2018advice only\u2019 referral can be made to the Paeds GI team using SCI-GW or advice requested via the service email.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Any queries or questions relating the Paediatric Coeliac Service can be emailed to&nbsp;<a href=\"mailto:loth.cypcoeliac@nhs.scot\" target=\"_blank\" rel=\"noreferrer noopener\">loth.cypcoeliac@nhs.scot<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">If a diagnosis is made either \u2018no-biopsy\u2019 or following endoscopic assessment, the Dietitians will see and enrol the patient into the GFFS.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><mark style=\"background-color:#ffffff\" class=\"has-inline-color has-alert-red-color\">There is no need for GPs to enrol the patients into the service.<\/mark><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Who to test:<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Both of the following \u2018who to test\u2019 guidelines are relevant:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Current symptoms and signs to consider testing is in Table 2 (guidance from ESPGHAN 2020).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Coeliac disease investigation is quick and relatively easy \u2013 anti-TTG IgA serology is very reliable.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Testing should be considered and performed in anyone who:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>has associated symptoms (see the table below), or<\/li>\n\n\n\n<li>is in known \u2018at-risk\u2019 group (i.e. family member, relative), or<\/li>\n\n\n\n<li>is worried they may have the condition.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">It is important that patients are tested whilst&nbsp;<strong>on gluten<\/strong>&nbsp;\u2013 if they&nbsp;are gluten-free, then they should be advised to restart normal diet and then be tested in 6 weeks.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">If someone feels it would be difficult to do a challenge and cannot go back onto gluten they can be discussed with the coeliac service&nbsp;through an Advice only referral&nbsp;as to what options there are for testing&nbsp;and management.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patients should not be referred up to the GI service to have those tests organised.&nbsp; This can be done by primary or secondary care either directly in practice, or where necessary via&nbsp;the RHCYP phlebotomy service&nbsp;but should there be any potential issues or problems we are very happy to discuss.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"412\" height=\"496\" src=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Coeliac-Paediatric-Who-to-Test.jpg\" alt=\"Coeliac Paediatric Who to Test\" class=\"wp-image-1025\" style=\"width:492px\" srcset=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Coeliac-Paediatric-Who-to-Test.jpg 412w, https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Coeliac-Paediatric-Who-to-Test-249x300.jpg 249w\" sizes=\"auto, (max-width: 412px) 100vw, 412px\" \/><figcaption><span class=\"media-credit\">https:\/\/www.nice.org.uk\/guidance\/ng20\/chapter\/Recommendations#recognition-of-coeliac-disease<\/span><\/figcaption><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><em>NICE NG 20 who to test:<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.nice.org.uk\/guidance\/ng20\/chapter\/Recommendations#recognition-of-coeliac-disease\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.nice.org.uk\/guidance\/ng20\/chapter\/Recommendations#recognition-of-coeliac-disease<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><strong>LAB &amp; GI TEAM, &amp; JB JUNE 2026<\/strong><\/strong><\/p>\n\n\n\n<div class=\"wp-block-getwid-tabs\" data-active-tab=\"0\"><ul class=\"wp-block-getwid-tabs__nav-links\"><\/ul>\n<div class=\"wp-block-getwid-tabs__nav-link\"><span class=\"wp-block-getwid-tabs__title-wrapper\"><a href=\"#\"><span class=\"wp-block-getwid-tabs__title\">Referral Guidelines<\/span><\/a><\/span><\/div><div class=\"wp-block-getwid-tabs__tab-content-wrapper\"><div class=\"wp-block-getwid-tabs__tab-content\">\n<h4 class=\"wp-block-heading\">Who to refer:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>All children and young people under age 16 with a positive IgA tTG antibody &gt;4.5 u\/ml who are continuing to eat gluten.<\/li>\n\n\n\n<li>Patients with selective IgA deficiency (sIgAD) and children with a low IgA who have triggered the laboratory to perform an IgG tTG test and it is positive IgG tTG (&gt;10 units\/ml).<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Also:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Any existing CYP Coeliac Service patient under age 16 where there is advice required about their coeliac disease management or related issues<\/li>\n\n\n\n<li>Any &#8216;Advice only&#8217; Coeliac related question: e.g. who to test, when to test, how often etc. This may include those who may have gone gluten free and are seeking expert advice.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><mark style=\"background-color:#ffffff\" class=\"has-inline-color has-alert-red-color\"><strong>IMPORTANT &#8211;&nbsp;<\/strong>All patients with positive results who are referred to the service must continue to eat adequate amounts of gluten until instructed otherwise by secondary care.&nbsp;&nbsp;<\/mark><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.nhsinform.scot\/media\/2413\/diet-advice-when-being-tested-for-coeliac-disease-gluten-challenge.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.nhsinform.scot\/media\/2413\/diet-advice-when-being-tested-for-coeliac-disease-gluten-challenge.pdf<\/a><\/p>\n\n\n\n<h4 class=\"wp-block-heading\">How to refer \/ ask advice:<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">To&nbsp;Paediatric Coeliac Service&nbsp;using Sci-Gateway.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>RHCYP&gt;General Medicine&gt;LI Paediatric Coeliac Services<\/li>\n\n\n\n<li>Advice also available to all HCP via&nbsp;<a href=\"mailto:loth.cypcoeliac@nhs.scot\" target=\"_blank\" rel=\"noreferrer noopener\">loth.cypcoeliac@nhs.scot<\/a><\/li>\n<\/ul>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-getwid-tabs__nav-link\"><span class=\"wp-block-getwid-tabs__title-wrapper\"><a href=\"#\"><span class=\"wp-block-getwid-tabs__title\">Primary Care Management<\/span><\/a><\/span><\/div><div class=\"wp-block-getwid-tabs__tab-content-wrapper\"><div class=\"wp-block-getwid-tabs__tab-content\">\n<p class=\"wp-block-paragraph\"><\/p>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-getwid-tabs__nav-link\"><span class=\"wp-block-getwid-tabs__title-wrapper\"><a href=\"#\"><span class=\"wp-block-getwid-tabs__title\">Resources and Links<\/span><\/a><\/span><\/div><div class=\"wp-block-getwid-tabs__tab-content-wrapper\"><div class=\"wp-block-getwid-tabs__tab-content\">\n<p class=\"wp-block-paragraph\"><strong><a href=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/NHS-LOTHIAN-DIETETIC_5.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">NHS LOTHIAN DIETETIC LED COELIAC PATHWAY FLOWCHART JUNE 2026<\/a><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Lothian GFFS Gluten free information:&nbsp;<a href=\"https:\/\/services.nhslothian.scot\/glutenfreefoodservice\/\" data-type=\"URL\" data-id=\"https:\/\/services.nhslothian.scot\/glutenfreefoodservice\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/services.nhslothian.scot\/GlutenFreeFoodService\/Pages\/default.aspx<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Gluten Free Food Service Registration Form: &nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/services.nhslothian.scot\/GlutenFreeFoodService\/Documents\/GlutenFreeFoodRegistrationForm\">https:\/\/services.nhslothian.scot\/GlutenFreeFoodService\/Documents\/GlutenFreeFoodRegistrationForm<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">NHS Inform:&nbsp;<a href=\"https:\/\/www.nhsinform.scot\/illnesses-and-conditions\/stomach-liver-and-gastrointestinal-tract\/coeliac-disease\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.nhsinform.scot\/illnesses-and-conditions\/stomach-liver-and-gastrointestinal-tract\/coeliac-disease<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Coeliac UK:&nbsp;<a href=\"https:\/\/www.coeliac.org.uk\/information-and-support\/coeliac-disease\/about-coeliac-disease\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.coeliac.org.uk\/information-and-support\/coeliac-disease\/about-coeliac-disease\/<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.coeliac.org.uk\/information-and-support\/living-gluten-free\/kids-teens-and-young-adults\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.coeliac.org.uk\/information-and-support\/living-gluten-free\/kids-teens-and-young-adults\/<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">ESPGHAN 2020:&nbsp;<a href=\"https:\/\/www.espghan.org\/knowledge-center\/publications\/Clinical-Advice-Guides\/2020_New_Guidelines_for_the_Diagnosis_of_Paediatric_Coeliac_Disease\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.espghan.org\/knowledge-center\/publications\/Clinical-Advice-Guides\/2020_New_Guidelines_for_the_Diagnosis_of_Paediatric_Coeliac_Disease<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">NICE NG20:&nbsp;<a href=\"https:\/\/www.nice.org.uk\/guidance\/ng20\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.nice.org.uk\/guidance\/ng20<\/a><\/p>\n<\/div><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Coeliac Testing Issues PLEASE NOTE UPDATED ADVICE (18th June 2026) gives a new tTG-IgA range of negative &lt;4.5U\/mL due to a change in method, but please always follow the interpretative comments attached to the result. Background Coeliac disease is common (affecting approximately 1% of the general population), but&nbsp;it&nbsp;is estimated that around two thirds of patients<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":3956,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_searchwp_excluded":"","footnotes":""},"categories":[520],"class_list":["post-3802","page","type-page","status-publish","hentry","category-coeliac-paediatric"],"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"rttpg_featured_image_url":null,"rttpg_author":{"display_name":"NHS Lothian","author_link":"https:\/\/apps.nhslothian.scot\/refhelp\/author\/nhs-lothian\/"},"rttpg_comment":0,"rttpg_category":" <a href=\"https:\/\/apps.nhslothian.scot\/refhelp\/category\/paediatric\/paediatric-gastrointestinal\/coeliac-paediatric\/\" rel=\"tag\">Coeliac (Paediatric)<\/a>","rttpg_excerpt":"Coeliac Testing Issues PLEASE NOTE UPDATED ADVICE (18th June 2026) gives a new tTG-IgA range of negative &lt;4.5U\/mL due to a change in method, but please always follow the interpretative comments attached to the result. Background Coeliac disease is common (affecting approximately 1% of the general population), but&nbsp;it&nbsp;is estimated that around two thirds of patients","_links":{"self":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/3802","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/comments?post=3802"}],"version-history":[{"count":29,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/3802\/revisions"}],"predecessor-version":[{"id":28885,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/3802\/revisions\/28885"}],"up":[{"embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/pages\/3956"}],"wp:attachment":[{"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/media?parent=3802"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/apps.nhslothian.scot\/refhelp\/wp-json\/wp\/v2\/categories?post=3802"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}