{"id":3801,"date":"2022-05-03T11:47:20","date_gmt":"2022-05-03T10:47:20","guid":{"rendered":"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/coeliac\/"},"modified":"2026-04-09T07:54:41","modified_gmt":"2026-04-09T06:54:41","slug":"coeliac","status":"publish","type":"page","link":"https:\/\/apps.nhslothian.scot\/refhelp\/guidelines\/gastrointestinal\/coeliac\/","title":{"rendered":"Coeliac"},"content":{"rendered":"\n<p class=\"has-alert-red-color has-text-color wp-block-paragraph\"><strong><span style=\"text-decoration: underline\">Coeliac Testing Issues<\/span><\/strong><\/p>\n\n\n\n<p class=\"has-alert-red-color has-text-color wp-block-paragraph\"><strong>Due to supply issues affecting Coeliac testing in NHS Lothian, until notified otherwise, there are changes in the interpretation of Coeliac results.<br>PLEASE NOTE THAT THE UPDATED ADVICE (8th April 2026) gives a new tTG-IgA range of negative &lt;2.5U\/mL, but please always follow the interpretative comments attached to the result.<br>Please follow the guidance in <strong><strong><a href=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Urgent-communication-regarding-coeliac-testing-service-in-Lothian-8th-April-2026-FOR-GP.pdf\" data-type=\"link\" data-id=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Urgent-communication-regarding-coeliac-testing-service-in-Lothian-March-2026.pdf\">this letter<\/a><\/strong><\/strong> from the Department of Laboratory Medicine. This message will be removed when the issue has been resolved.<\/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).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The condition is more common in those with:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>A positive family history<\/li>\n\n\n\n<li>Other autoimmune disease e.g. Type 1 Diabetes, thyroid disease<\/li>\n\n\n\n<li>Chromosomal abnormalities e.g. Down Syndrome<\/li>\n\n\n\n<li>Classical abdominal symptoms may be vague or absent.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Since January 2020 the management of Coeliac disease in NHS Lothian is dietician-led in line with Scottish Government Policy.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Since 2020 NHS Lothian has adopted a no-biopsy diagnosis for <strong>symptomatic adult patients with IgA tTG <\/strong><strong>\u2265<\/strong><strong> 50 two occasions<\/strong>, with the approval of the British Society of Gastroenterology.&nbsp; In Paediatrics, a no-biopsy strategy has been in place for a number of years.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The <strong><a href=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/NHS-LOTHIAN-DIETETIC-LED-COELIAC-PATHWAY-FLOWCHART-JUNE-2024.pdf\" data-type=\"link\" data-id=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/NHS-LOTHIAN-DIETETIC-LED-COELIAC-PATHWAY-FLOWCHART-JUNE-2024.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">NHS LOTHIAN DIETETIC LED COELIAC PATHWAY FLOWCHART JUNE 2024<\/a> <\/strong>outlines a summary of how Coeliac Disease is diagnosed and managed in NHS Lothian.<\/p>\n\n\n\n<p class=\"has-alert-red-color has-text-color has-link-color wp-elements-56cc4288953f0b9cac312141e976245f wp-block-paragraph\">Please remember that when referring patients <strong>all patients must continue to eat adequate amounts of gluten until instructed otherwise by secondary care<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>If you are considering a diagnosis of Coeliac Disease due to symptoms including Chronic Diarrhoea and\/or Weight loss, please remember that unexplained chronic diarrhoea is an <\/strong><a href=\"https:\/\/eur01.safelinks.protection.outlook.com\/?url=https%3A%2F%2Fapps.nhslothian.scot%2Frefhelp%2Fguidelines%2Fsexualreprohealth%2Fhiv%2Fhiv-indicator-conditions%2F&amp;data=05%7C02%7CHeather.Levy%40nhs.scot%7C279a8f44159a448ee9db08dd5c91f067%7C10efe0bda0304bca809cb5e6745e499a%7C0%7C0%7C638768504051833042%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=adTbc5RguWV%2FgaposxMQ9%2FcDK2sePK53EuhjPSHQiyM%3D&amp;reserved=0\" target=\"_blank\" rel=\"noreferrer noopener\">HIV indicator condition<\/a>&nbsp;<strong>and HIV testing should be considered.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>J.B. &amp; H.G. 06-03-25<\/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<p class=\"has-alert-red-color has-text-color wp-block-paragraph\"><strong>Due to supply issues affecting Coeliac testing in NHS Lothian, from 27\/03\/26 until notified otherwise, there are changes in the interpretation of Coeliac results. Please follow the guidance in <a href=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Urgent-communication-regarding-coeliac-testing-service-in-Lothian-March-2026.pdf\" data-type=\"link\" data-id=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/Urgent-communication-regarding-coeliac-testing-service-in-Lothian-March-2026.pdf\">this letter<\/a> from the Department of Laboratory Medicine. This message will be removed when the issue has been resolved.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patients with IgA tTG antibody &gt;10 units\/ml<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patients with IgA tTG antibody 5-10 units\/ml on two occasions 3-months apart<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patients with selective IgA deficiency and positive IgG tTG (&gt;10 units\/ml)<\/p>\n\n\n\n<p class=\"has-alert-red-color has-text-color has-link-color wp-elements-276830d35b82a1cb10612fbb1140ff88 wp-block-paragraph\"><strong>All patients must continue to eat adequate amounts of gluten until instructed otherwise by secondary care <\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patients can be provided with this information sheet on why and how they need to keep eating gluten until they have been told to stop by secondary care: <a href=\"https:\/\/appnhs24wp41a8c38064.blob.core.windows.net\/blobappnhs24wp41a8c38064\/wp-content\/uploads\/2023\/04\/diet-advice-when-being-tested-for-coeliac-disease-gluten-challenge.pdf\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>PIL Continuing to eat gluten when a diagnosis of coeliac disease is being considered<\/strong><\/a><\/p>\n\n\n\n<h4 class=\"wp-block-heading\">How to refer:<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">Refer to Gastroenterology \u2013 Medical via SCI Gateway using the following pathways:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>RIE &gt;&gt; Gatroenterology \u2013 Medical &gt;&gt; LI Coeliac Referral<\/li>\n\n\n\n<li>SJH &gt;&gt; Gatroenterology \u2013 Medical &gt;&gt; LI Coeliac Referral<\/li>\n\n\n\n<li>WGH &gt;&gt; Gatroenterology \u2013 Medical &gt;&gt; LI Coeliac Referral<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Decision not to refer:<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Occasionally in Primary Care a decision may be made to <strong>not<\/strong> refer a patient who has IgA tTG antibody results indicative of a Coeliac diagnosis (e.g. patient moving to a different area \/ country). In these rare cases it is very helpful if Primary Care can inform the Coeliac service that despite the positive lab results a referral is <strong>not<\/strong> going to be made. This can be done by emailing the Coeliac Service inbox <a href=\"mailto:loth.coeliacservice@nhs.scot\" target=\"_blank\" rel=\"noreferrer noopener\">loth.coeliacservice@nhs.scot<\/a> <strong>(Email for professional use only)<\/strong><\/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\">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<h4 class=\"wp-block-heading\">Whom to test:<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">Testing with coeliac serology is recommended for all patients presenting with:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Unexplained iron deficiency anaemia<\/li>\n\n\n\n<li>Prolonged fatigue<\/li>\n\n\n\n<li>Chronic or intermittent diarrhoea<\/li>\n\n\n\n<li>Symptoms suggestive of Irritable Bowel Syndrome<\/li>\n\n\n\n<li>Sudden or unexpected weight loss<\/li>\n\n\n\n<li>Failure to thrive or faltering growth in children<\/li>\n\n\n\n<li>Persistent or unexplained GI symptoms including nausea and\/or vomiting<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>If you are considering a diagnosis of Coeliac Disease due to symptoms including Chronic Diarrhoea and\/or Weight loss, please remember that unexplained chronic diarrhoea is an<\/strong> <a href=\"https:\/\/eur01.safelinks.protection.outlook.com\/?url=https%3A%2F%2Fapps.nhslothian.scot%2Frefhelp%2Fguidelines%2Fsexualreprohealth%2Fhiv%2Fhiv-indicator-conditions%2F&amp;data=05%7C02%7CHeather.Levy%40nhs.scot%7C279a8f44159a448ee9db08dd5c91f067%7C10efe0bda0304bca809cb5e6745e499a%7C0%7C0%7C638768504051833042%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&amp;sdata=adTbc5RguWV%2FgaposxMQ9%2FcDK2sePK53EuhjPSHQiyM%3D&amp;reserved=0\" target=\"_blank\" rel=\"noreferrer noopener\">HIV indicator condition<\/a><strong>&nbsp;and HIV testing should be considered.<\/strong><\/p>\n\n\n\n<h4 class=\"wp-block-heading\">Testing should be considered in:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Unexplained recurrent aphthous mouth ulcers or angular stomatitis<\/li>\n\n\n\n<li>Unexplained persistently raised liver enzymes<\/li>\n\n\n\n<li>Persistent or unexplained constipation<\/li>\n\n\n\n<li>Unexplained reduced bone mineral density or metabolic bone disease e.g. osteomalacia<\/li>\n\n\n\n<li>Unexplained infertility<\/li>\n\n\n\n<li>Unexplained neurological symptoms, especially ataxia<\/li>\n\n\n\n<li>Lymphoma<\/li>\n\n\n\n<li>Sjogrens Syndrome<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">A positive serological test for Coeliac Disease depends upon the interaction between dietary gluten and the small intestinal mucosa. Thus, if gluten is withdrawn from the diet, the tests become unreliable as a diagnostic tool.<\/p>\n\n\n\n<p class=\"has-alert-red-color has-text-color has-link-color wp-elements-20349bba576692c2a6fcba34ed9e11d3 wp-block-paragraph\">&nbsp;<strong>All patients must continue to eat adequate amounts of gluten until instructed otherwise by secondary care<\/strong>. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Patients can be provided with this information sheet on why and how they need to keep eating gluten until they have been told to stop by secondary care: <a href=\"https:\/\/appnhs24wp41a8c38064.blob.core.windows.net\/blobappnhs24wp41a8c38064\/wp-content\/uploads\/2023\/04\/diet-advice-when-being-tested-for-coeliac-disease-gluten-challenge.pdf\" target=\"_blank\" rel=\"noreferrer noopener\"><strong>PIL Continuing to eat gluten when a diagnosis of coeliac disease is being considered<\/strong><\/a><\/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\"><a href=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/NHS-LOTHIAN-DIETETIC-LED-COELIAC-PATHWAY-FLOWCHART-JUNE-2024.pdf\" data-type=\"link\" data-id=\"https:\/\/apps.nhslothian.scot\/files\/sites\/2\/NHS-LOTHIAN-DIETETIC-LED-COELIAC-PATHWAY-FLOWCHART-JUNE-2024.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">NHS-LOTHIAN-DIETETIC-LED-COELIAC-PATHWAY-FLOWCHART-JUNE-2024.pdf<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"\/files\/sites\/2\/NHS-LOTHIAN-COELIAC-SERVICE-REVIEW-27.04.20.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">NHS LOTHIAN COELIAC SERVICE REVIEW April 2020.pdf<\/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\/wp-content\/uploads\/sites\/22\/2022\/02\/GlutenFreeFoodRegistrationForm.pdf\" data-type=\"URL\" data-id=\"https:\/\/services.nhslothian.scot\/glutenfreefoodservice\/wp-content\/uploads\/sites\/22\/2022\/02\/GlutenFreeFoodRegistrationForm.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/services.nhslothian.scot\/GlutenFreeFoodService\/Documents\/GlutenFreeFoodRegistrationForm.pdf<\/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\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\">BSG guidance:&nbsp;<a href=\"https:\/\/www.bsg.org.uk\/covid-19-advice\/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.bsg.org.uk\/covid-19-advice\/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease\/<\/a>&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">NHS Choices Coeliac Disease:&nbsp;<a href=\"https:\/\/www.nhs.uk\/conditions\/coeliac-disease\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.nhs.uk\/conditions\/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<\/div><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Coeliac Testing Issues Due to supply issues affecting Coeliac testing in NHS Lothian, until notified otherwise, there are changes in the interpretation of Coeliac results.PLEASE NOTE THAT THE UPDATED ADVICE (8th April 2026) gives a new tTG-IgA range of negative &lt;2.5U\/mL, but please always follow the interpretative comments attached to the result.Please follow the guidance<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":3955,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_searchwp_excluded":"","footnotes":""},"categories":[197],"class_list":["post-3801","page","type-page","status-publish","hentry","category-coeliac"],"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\/gastrointestinal\/coeliac\/\" rel=\"tag\">Coeliac<\/a>","rttpg_excerpt":"Coeliac Testing Issues Due to supply issues affecting Coeliac testing in NHS Lothian, until notified otherwise, there are changes in the interpretation of Coeliac results.PLEASE NOTE THAT THE UPDATED ADVICE (8th April 2026) gives a new tTG-IgA range of negative &lt;2.5U\/mL, but please always follow the interpretative comments attached to the result.Please follow the 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