Private Endomysial Antibody testing provider recommendations in UK

[Stumplet]

Hi All,

I am looking for recommendations for a reliable private uk blood testing company / provider to test me for endomysial antibodies. I don't need a full panel, just those specifically.

Can anyone give any recommendations?

I am based in north east england, so somewhere nearby or that I can post my sample to would be ideal. But let me know anywhere reliable in the UK.

Thanks!

[trents]

Welcome to the forum, Stumplet! Just curious. Why do you want just an EMA? Have you had other celiac antibody testing done already? EMA is very specific for celiac disease but less sensitive than, say, the tTG-IGA.

[Stumplet]

Thanks!

I've had Ttg and DGP (both below threshold for postive) but not EMA so I just wanted to fully exhaust all antibody options basically

For some reason in the UK, they will only test for EMA via the NHS if you have a postive tTG-IGA. I'm going to ask again about EMA given my symptoms, but I think i'll probably have to pay for it privately.

[trents]

Have you considered NCGS?

[Stumplet]

I think my doctor is giving more attention to the seronegative coeliac idea because I have quite a few pre-existing autoimmune condtions, two of which apparenly often cluster with coeliac disease (hashimotos and primary biliary cirrhosis). 

However, if all my testing comes back clear I think NCGS is defintely a potential cause. From what I can tell there isn't any definitive tests for NCGS (I might be wrong though!)

Also, do you know if NCGS can cause malabsoption? As I have a few issues with deficiences which I think is also a reason my doctor thought coeliac might be a possiblity.

[trents]

No, NCGS should not cause malabsorption. You are correct. There currently are no test for NCGS. But some gluten disorder experts believe NCGS can be a precursor to celiac disease.

Seronegative celiac disease? Is that a thing? We have some reports on this form of people who, symptomatically, scream celiac disease and have other laboratory indicators such as anemia who report negative antibody testing. And we also have people who have positive antibody testing but no villous atrophy. I just thing there is much we don't know yet about gluten disorders and some of the real world scenarios don't fit into our neat little diagnostic categories.

[Stumplet]

Yeah approximatly between 5 - 15% of people with coeliac disease will not test positive for any of the (known) antibodies, but when undergoing intestinal biopsy will show the same damage as seropositive coeliacs. Seronegative coeliac is harder to prove, but basically if coeliac consistent biopsy results are found, all other causes of villous atrophy are ruled out, AND the person gets better on a gluten-free diet that's how its diagnosed  The downside to seronegative coeliac disease is that there's no blood biomarker to monitor progress, so i think more endoscopies end up being needed long term.

I've actually just had my intestinal biopsies via the NHS, because the UK guidelines state if the person is higher risk (e.g. autoimmune history, relatives have coeliac disease) and has symptoms consistent with coeliac disease they should be refered for biospies even with negative antibodies, so it's defintely a real thing

That's an interesting idea that NCGS could be a coeliac precursor, is NCGS also only found in people who can genetically develop coeliac disease? I definitely agree with you that there's a lot that isn't known yet! For example they still don't know why a small minority of coeliacs are seronegative. I wonder if there's other antibodies for coeliac disease that just haven't been found yet, or perhaps if coeliac co-occours with other conditions it manifests differently.  I guess there's always going to be weird outliers that don't fit into the standard rules as you say!

[trents]

Or, there are other genes that haven't been discovered yet. For years it was thought there were only two but I read somewhere about a year ago that medical scientists in Irsael? believe they found another.

[Stumplet]

Yeah for sure! Perhaps different genes results in slightly different colieac manifestations! 

[trents]

18 minutes ago, Stumplet said:

Yeah for sure! Perhaps different genes results in slightly different colieac manifestations! 

No. What I meant was that not having either HL-DQ2 and HL-DQ8 may not in fact rule out celiac disease.

[Scott Adams]

You may want to contact these companies:

Medichecks: Medichecks offers a variety of blood tests, including celiac disease testing. You can order tests online, and they provide convenient home blood test kits.

Thriva: Thriva provides at-home blood testing kits, and they offer celiac disease tests that include relevant antibody markers.

Blue Horizon Medicals: Blue Horizon Medicals is another company that offers a range of private blood tests, and they can provide celiac-related blood tests.

Forth With Life: Forth With Life offers a range of health tests, including celiac disease screening, with the convenience of at-home sample collection.

[Stumplet]

Thanks for your response @Scott Adams

I will look into these tomorrow

[Russ H]

The EMA test just detects IgA anti-tTG2 but is relatively crude and insensitive compared with modern IgA tTG2 testing. This is why it is more specific but less sensitive.

EMA testing came about as a chance finding from some research where people with coeliac disease were used as a control group, and it was discovered that they had antibodies that bind to endomysial tissue. It was later established that the antibodies are IgA anti-tTG2. Both tests measure the same thing.

https://pubmed.ncbi.nlm.nih.gov/9212111/

[frieze]

On 10/15/2023 at 10:07 PM, trents said:

Or, there are other genes that haven't been discovered yet. For years it was thought there were only two but I read somewhere about a year ago that medical scientists in Irsael? believe they found another.

Check out pubmed. PLoS 2016.  Lower case o is correct