Looking for ADVANCED coeliac testing - in the UK

Hi ,

I am looking for a centre of excellence in the UK NHS or Private to do advanced coeliac testing . My boys & I have Polyglandular autoimmune disease ( which covers a number of conditions & we have many of the conditions ) One child has coeliac disease & I wish to confirm

as far as I can that the other child does or doesn't ( including subclinical )

Recommended Blood Tests:

Anti-tissue transglutaminase antibody (tTG – IgA and IgG) Yes available

commonly used whether or not symptoms are present and the most sensitive test available

Anti-endomysial antibody (EMA-IgA) – highly specific marker for celiac disease Yes available

+++++++++++++++++++++++++++++++++++++++++++++++++

*******Anti-deaminated gliadin peptide (DGP – IgA and IgG)********* LOOKING FOR

+++++++++++++++++++++++++++++++++++++++++++++++++

used when tTG or EMA is negative and in cases where patient is IgA deficient

Total serum IgA – used to check levels to exclude selective IgA deficiency that results in a false negative test

+++++++++++++++++++++++++++++++++++++++++++++++++

AGAs IgG - LOOKING FOR

+++++++++++++++++++++++++++++++++++++++++++++++=

Anti-gliadin antibody (AgA – IgG and IgA) YES available

not considered sensitive or specific enough for adults, but used for children under 2 because tTG and EMA antibodies may be absent. The anti-DGP test is sensitive in this group.

Any ideas ????

8 Replies

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  • Hi PurpleMummy,

    In all honesty any good Gastro/ Endochrinologist/ Paediatrician should run these tests for you especially given the Polygladular link you have mentioned. What's made you want to seek a centre of excellence? I ask as the diagnosis in children is generally a lot better than it is in adults.

    However, there are a few centres of Coeliac excellence in the UK. It normally means they have a much more integrated approach with other departments like the dietitians and the consultants specialise in these areas.

    Centres include:

    > Sheffield

    sth.nhs.uk/search?q=coeliac

    > Cambridge

    cuh.org.uk/resources/pdf/pa...

    cuh.org.uk/addenbrookes/ser...

    childrenataddenbrookes.org....

    You may have to contact your PCT to get a referral to these as often GPs will tell you you can only be referred to a hospital within your area (which isn't actually true).

    I'd also say that UCH in London is a hospital that is a centre of excellence generally and having moved there (for another condition) I can tell you it was well worth the fight to get there.

    Good luck and keep us posted.

    Would you like to do a short post for us here on Polyglandular syndrome? It may help inform other readers having unexplained symptoms.

  • Hi ,

    Thank you Fiona ,

    We are in fact at UCLH With Professor Hindmarsh who is great but he can't do the tests I marked as " looking for " in my post . The standard ones we have had done & are being done every 6 months .

    With my younger son it was easy peasy he tested positive to the basic tests .

    With my older son everything was negative . Apart from Tissue Transglutaminase IgA

    which said 0 . 7 Negative - range 0 - 6.99 .

    However should I be now watching that number closely ???

    As antibodies have to start somewhere it seems to me .

    Yes I will write up an article when I get a moment a bit in the thick of it at the moment as I ( yep I ) diagnosed about 6 conditions last year for all of us ... Doctors still trying to catch me up .

  • In December my gastroenterologist told me about the new test for anti-DGP - and in the next breath said it wasn't available in the UK.

    Sorry.

  • In the UK the standard procedure for CD are the IgA blood tests as you have mentioned followed by the biopsy if positive and retesting 6 monthly which you specialist appears to be doing.

    However there are also additional tests available - I use these as a nutritionist with clients

    Genova diagnostics do the following : (bloods)

    Anti-Deamidated Gliadin IgA (DGP IgA)

    Anti-Endomysial IgA antibodies

    Anti-gliadin IgA antibodies

    Anti-gliadin IgG antibodies

    Anti-Tissue Transglutaminase IgA antibodies

    Total IgA

    Cyrex tests will be available around Easter in the UK

    They have various panels of interest to you including an autoimmune screen (bloods), comprehensive bloods for coeliac and a saliva test too. These are available through practitioners via Regenerus Labs

    TDL to a coeliac profile : Endomysial IgA Reticulin IgA Gliadin IgA + lgG Total IgA

    Tissue Transglutaminase (IgA) TAT and HLA DQ2/DQ8

    Hope this helps

  • Can I please ask you to direct me on these tests on Genova's website? I can't seem to locate them? is it one test that tests all of these?

    thanks

  • Genova labs are a private laboratory and you can access the tests through a registered practitioner - with the genova full coeliac screen of course you need to be eating gluten for 6 weeks before the test to ensure it is an accurate results see this link gdx.net/uk/product/14 It is a blood test - turnaround normally 10 days

    Cyrex tests should be in the UK by June

    Hope this helps

  • I'm now under st marks hospital, Harrow, London. It's the world centre of excellence for bowel cancers so they may be able to help. Norwich hospital is also a centre of excellence. I'm under Brian Saunders who's the top endoscopist. I have hyperplastic polyposis syndrome it took over 2 years to find him. And that was only by a surgeon with an attitude problem shouting at me before my last camera in my bowel that I should have seen a professor at st marks as she'd advertised for people like me ( she was at imperial college hospital, but referral was passed on) she put me in touch with him. This may help you or not.

  • Have you come across the Cyrex lab tests cyrexlabs.com

    advancenutrition.co.uk/site...

    Patients lacking secretory IgA compensate by making extra IgM and so a test that includes IgM measurements may be useful

    A: REFERENCES

    1. Cardinale F et al. Aberrations in titer and avidity of serum IgM and IgG antibodies in microbial and food antigens in IgA deficiency. Adv Exp Med, 2005; 371:713-716.

    2. Hvatum M et al. Serum IgM subclass antibodies to a variety of food antigens in patients with Celiac disease. Gut, 1992; 33:632-638.

    3. Czerkinsky C et al. IgA antibody-producing cells in peripheral blood after antigen ingestion: evidence for a common mucosal immune system in humans. Proc Natl Acad Sci, 1989; 84:2449-2453.

    "Abstract from this article. The finding that ingestion of antigens results in the selective induction of IgA antibodies in external secretions suggests that antigen sensititizes Peyser's patch lymphoid cells, which migrate to mucosal sites and generate local secretory IgA (S-IgA) antibody responses. Evidence for a common mucosal immune system in humans has been scanty because of the difficulty in demonstrating migratory behavior of Peyer's patch cells. In the present study, peripheral blood mononuclear cells (PBMC) from human volunteers who had ingested capsules containing killed Streptococcus mutans were assayed for spontaneous antibody-producing cells. Four of five volunteers exhibited circulating IgA-producing cells within 7 days and reached maximum responses by days 10-12. One IgA-deficient subject exhibited IgM responses with identical kinetics."

    To quote some of the researchers referenced in A: Czerkinsky, "IgA deficient individuals make secretory IgM;" Coelho, "saliva of IgA deficient patient contained IgG and IgM;" G. Norhagen E., "A statistically significant increase in salivary IgM and IgG levels was noted in individuals with selective IgA deficiency compared to healthy normal individuals. Healthy individuals with selective IgA deficience did not have increased concentrations of salivary IgM compared to infectious-prone patients;" Stiehm, "In IgA deficient individuals, there may be an increase in secretory IgM in the saliva and other intestinal fluids."

    They have array 1 which is a saliva test making it useful for young children

    Array 1 as being able to detect reactivity to gluten before villous atrophy?

    A: REFERENCES

    1. Bonamico M et al. First salivary screening of celiac disease by detection of anti-transglutaminase autoantibody radioimmunoassay in 5000 Italian primary school children. J Pediatr Gastroenterol Nutr, 2011; 52(1):17-20.

    "In conclusion, the present study demonstrates that it is possible to perform a powerful, noninvasive, simple, well-accepted, inexpensive, reproducible, and sensitive CD screening using saliva."

    2. Tosco A et al. Immunoglobulin A anti-tissue transglutaminase antibody deposits in the small intestinal mucosa of children with no villous atrophy. J Pediatr Gastroenterol Nutr, 2008; 47:293-298.

    3. Bonamico M et al. Tissue transglutaminase autoantibody detection in human saliva: a powerful method for celiac disease screening. J Pediatr, 2004; 9:69-76.

    4. Bonamico M et al. Radioimmunological detection of anti-transglutaminase autoantibodies in human saliva: a useful test to monitor celiac disease follow-up. Aliment Pharmacol Ther, 2008; 28:364-370.

    5. Hakeem V et al. Salivary IgA antigliadin antibody as a marker for Celiac disease. Arch Dis Child, 1992; 67:724-727.

    6. Al-Bayaty HF et al. Salivary and serum antibodies to gliadin in the diagnosis of celiac disease. J Oral Pathol Med, 1989; 18:578-581.

    7. Di Leo M et al. Serum and salivary antiendomysium antibodies in the screening of coeliac disease. Panminerva Med, 1999; 41:68-71.

    8. Brandtzaeg P. Do salivary antibodies reliably reflect both mucosal and systemic immunity? Ann N Y Acad Sci, 2007; 1098:288-311.

    9. Rumbo M et al. Detection and characterization of antibodies specific to food antigens (gliadin, ovalbumin and beta-lactoglobulin) in human serum, saliva, colostrums and milk. Clin Exp Immunol, 1998; 112:453-458.

    Gluten-sensitivity, like any other food sensitivity, can be measured in a variety of ways including, skin prick, oral fluid, blood, stool and for the alternative practitioners muscle testing. These methods are not new and have been used by practitioners for decades. Before a blood test can be positive, in most patients, there has to be some kind of GI damage in order for the systemic immune system to be challenged by the food antigens. Protecting the gut barrier from antigen penetration is a mucosal layer. If the mucosal layer is functioning, food antigens cannot penetrate the GI barrier. Therefore, before gut damage can occur, the mucosa must be made dysfunctional. A salivary assessment can uncover mucosal immune challenges that if not addressed, could result in the breakdown of the mucosal layer, which leaves the GI barrier vulnerable to penetration of invading antigens. For the genetically susceptible individual this could mean the development of Celiac disease. The Wheat/Gluten Proteome Reactivity and Autoimmunity panel offered by Cyrex is the most sensitive wheat reactivity test available clinically. Rather than depending on one molecule of wheat to determine gluten-sensitivity Cyrex is assessing twelve proteins, peptides and enzymes associated with wheat.

    But if possible I would do the array 3 which is very comprehensive and may help answer your questions

    Wheat/Gluten Proteome Reactivity & Autoimmunity

    Wheat IgG

    Wheat IgA

    Wheat Germ Agglutinin IgG

    Wheat Germ Agglutinin IgA

    Native + Deamidated Alpha-Gliadin-33-mer IgG

    Native + Deamidated Alpha-Gliadin-33-mer IgA

    Alpha-Gliadin-17-mer IgG

    Alpha-Gliadin-17-mer IgA

    Gamma-Gliadin-15-mer IgG

    Gamma-Gliadin-15-mer IgA

    Omega-Gliadin-17-mer IgG

    Omega-Gliadin-17-mer IgA

    Glutenin-21-mer IgG

    Glutenin-21-mer IgA

    Gluteomorphin+Prodynorphin IgG

    Gluteomorphin+Prodynorphin IgA

    Gliadin-Transglutaminase IgG

    Gliadin-Transglutaminase IgA

    Transglutaminase-2 IgG

    Transglutaminase-2 IgA

    Transglutaminase-3 IgG

    Transglutaminase-3 IgA

    Transglutaminase-6 IgG

    Transglutaminase-6 IgA

    This test is normally suitable from 2 years upwards - not sure about younger children

    regeneruslabs.com/ are the suppliers in the UK

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