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New Nhs Nice Coeliac Guidelines To Uk Drs


georgie

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georgie Enthusiast

Recognition and assessment of coeliac disease

NHS NICE Coeliac Guidelines to UK Drs

Clinical guidelines CG86

Issued: May 2009

How reliable are serological tests compared with intestinal biopsy in detecting early coeliac disease?

− Evidence of the presence of coeliac disease can be suggested by the finding of highly specific and sensitive antibodies to tissue transglutaminase and to endomysium. Confirmation of the presence of intestinal damage revealed by the histological examination of small-intestinal biopsies remains the traditional method of making the diagnosis. The sensitivity of this investigation has rarely, if ever, been formally investigated. With increased use of serological tests for coeliac disease it has become evident that some people with positive coeliac autoantibodies have apparently normal small-intestinal histology. Some such people are, nonetheless, symptomatic and have gluten-sensitive malabsorption. Early detection of coeliac disease may be important to prevent long-term complications, Therefore longitudinal studies are needed to determine whether serological markers are superior and can reliably detect early coeliac disease before intestinal damage occurs.

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This is a quick flow chart from the Quick Reference Guide

Does the person have any symptoms in Box A or B

Yes

Is the person on a Gluten containing diet

No

Is the person willing/able to reintroduce Gluten to their diet ?

No

Refer them to a Gastro Specialist and inform them that it may be difficult to confirm a diagnosis on intestinal biopsy , and that this may have implications on their ability to access prescribed gluten-free foods

Box A

Offer serological testing to children and adults with any of the following signs , symptoms and conditions.

Chronic or intermittant diarrhoea

Failure to thrive or faltering growth ( in children)

Prolonged Fatigue ( "tired all the time" )

Recurrent abdominal pain , cramping or distention

Unexplained iron anaemia or other unspecified anaemia

Conditions

Autoimmune Thyroid Disease

Dermititis Herpetiformis

Irritable Bowel Syndrome

Type 1 Diabetes

First degree relatives ( parents, siblings or children ) with Coeliac Disease

Box B

Consider offering serological testing to children and adults with any of the following

Addisons Disease

amenorrhoea

apthous stomatitis ( mouth ulcers)

autoimmune liver conditions

autoimmune myocarditis

chronic Thombocytopenia

dental enamel defects

depression or bipolar disorder

downs syndrome

epilepsy

low trauma fracture

lymphoma

metabolic bone disease

microscopic colitis

persistant or unexplained constipation

persistantly raised liver enzymes with unknown cause

polyneuropathy

recurrent miscarriage

reduced bone mineral density

sarcoidosis

Sjogren's syndrome

Turner syndrome

unexplained alopecia

unexplained subfertility


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    • trents
    • cristiana
      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
    • knitty kitty
      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/
    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
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