Help...need advice and experiences from you all (the experts...) complicated and struggling with a diagnosis......(TTG IGA, EMA, endos, b12)

Hi all....I'm desperate for any advice, suggestions and experiences which might help me solve my issues and diagnosis....a very wise bird (she knows who!) suggested posting to ask the advice of all......

So after several months of being desperately unwell.....main one being complete exhaustion...(couldn't move, function or think..,) and entirely unlike me as I work FT in a demanding and stressful job with a young family......I had some blood tests....

My bloods were all wrong. Low platelets, white cells etc.....

Had more tests inc for CD.....

Thy came back off the scale for TTb IGa as over 300.

But ema Iga negative.

Sent for endoscopy. Endoscopist said def CD with TTG IG off the scale like that.

Back at docs last week as ESP unwell post endoscopy couple of days before....more bloods.

Told today by receptionist B12 too low (161.......) and need it repeated and an appointment with doc. Doc tried to ring later but missed call.

Receptionist said endoscopy was normal as asked result whilst on phone.(bit not disused or confirmed by Gp)

So does that leave me....what should I ask for or expect next?

Every single bit of research etc on online says with a TTG IGA like mine it must be CD and I know an endoscopy will not always find damage (4 samples taken).....

Ives been GF for 2 weeks now.,,,,the change is absurd.......(although took until this weekend...). I am starting to have a bit of colour, my eyes look less tired and black head is clearing and I actually feel like working....not just sleeping.....(but still tired) BUT it's also made me realise that I've clearly had an upset tummy for as long as I can remember..... On reflection I've been going to the loo lots and not always that over the last few days ive hardly been at all and different and my tummy just feels still, settled and 'normal'....... Which worryingly makes me realise I'd forgotten what 'normal' was......

So...advice, next steps, help, experiences.....all if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT CD....what else..!!?

Thanks loads experts....,

13 Replies

  • Don't always look for the definitive diagnosis. Watch your oil based vitamins like A and D. You are most likely deficient that goes along with the B12. Also take a B12/Folate so you can absorb the B12.

  • Hi Triomum

    As you've had the endoscopy and it didn't confirm CD my advice is go gluten free and live a better life. The only disadvantage I can see is you will not qualify for GF food on the NHS.

    Best of luck

  • And they have cut back so much on what you can have on Perscription it is a waste of time, I don't bother anymore it worked out far more expensive paying the price of a perscription it worked out at £4.00 per box of Glutafin White Mix :o

  • If I were in your shoes, I would treat myself as coeliac.

    You have antibodies that are triggered by eating gluten. In my view, a great deal of the damage that is done in coeliac disease is because of the antibodies. TTG is an enzyme found in all the cells in the body. You need it, and if you don't have enough of it because its being destroyed by antibodies, then you will develop other problems in the future, like osteoporosis. (TTG helps to build bone).

    You don't have gut damage bad enough to show up on a biopsy. They might have missed the damage because it can be patchy. Or you might be in the earlier stages of coeliac, in which case it would progress to villous atrophy if you ate gluten for long enough... but do you really want to do harm your body further just to prove a point? Medics don't understand the mechanism that causes villous atrophy, and it may be a different mechanism that is not directly related to the antibodies at all - which would explain why some people have villous atrophy and no antibodies.

    Celiac disease is not just about the gut.

    And you have already discovered that you feel a lot better not eating gluten.

  • I know a lot of people who have chosen to live on a gluten free just because it makes them feel a lot better in them selves, so go for it. My hubby also takes Calcium Tablets and Vit B12 slow release

  • I also think that they are reluctant to make a positive diagnosis due to the funding, I get so annoyed a friend of mine is a Doctors receptionist and told me that because my hubby is clinically diagnosed the Doctor gets an extra £3000 + a year for him, but it does not get spent on him. We are changing Doctors in a different PCT apparently they are more generous with the prescribing of GF food, they couldn't deny him the diagnosis, considering it nearly ended his life !!!

  • Thnks all.....

    Really frustrated now......

    My TTG IGA is over 300

    My b12 is too low. Also been told today my folate is too low.

    But because my biopsy was I must be pernicious anaemia stress?!?

    Really!?!? Stress causing such raised TTG IGA!?!?


    Banging head off wall as I type...

  • I think that antibodies to TTG can be found in inflammatory bowel disease (IBD) as well as coeliac disease, but this might be because IBD involves gluten sensitivity too. People with IBD are way more likely to have coeliac disease. Who knows, since they don't actually know what causes IBD.

    Low iron and B12/folate seem to crop up whenever there's malabsorption in the gut. You probably have low zinc too, but they don't often check for that. Pernicious aneamia is autoimmune, but you don't need to have that to have low B12/folate. Malabsorption from the gluten-induced inflammation would be enough.

    My understanding of NCGS - which is what I have - is that it doesn't involve antibodies to TTG (although there may be antibodies to gliadin directly). With TTG antibodies, it is probably latent coeliac disease, which means that the TTG antibodies are predictive of developing overt coeliac disease in the future if you continue to eat gluten.

  • Hiya,

    Well if you bang your head against the wall hard enough for long enough; you might make a dent! Keep trying...! Lots of people here have their own stories of frustration with their GP.

    Just out of interest, does any GFG out there know of anyone who has been diagnosed a Coeliac just on blood test alone? It seems to me that because of her TTG result, Triomum might benefit from hearing how it came about and how it was then dealt with by the medical profession. Or does anyone know if NCGS causes the TTG result to go this high?

    I think Poing is right in what she says about gut damage sometimes being patchy or not severe enough to be picked up by biopsy.

    Btw, Triomum, who has mentioned pernicious anaemia to you? Was it a doctor? I mention it because you can be B12 deficient without having pernicious anaemia. Pernicious anaemia is an autoimmune condition and those who have it, have a lack of ability to make something called intrinsic factor in their stomach (feel free anyone to correct me if I have not described this very well). This in turn prevents the body from processing sources of dietary/orally taken B12.

    If your intrinsic factor level is normal, then the malabsorption will be happening elsewhere in the gut and it's a bit different.

    Take care and keep taking the (new?) folate tablets!


  • Hiya

    Thanku....just so frustrated.

    Doc mentioned pernicious anaemia.

    My question was......but then why is my ttg iga so very high if not CD?

    She said 'lots of things cause raised ttg iga' and it's not that high.....

    Over 300?!?!

    So what causing it?

    As for folate tabs-I have no no tablets or treatment for anything.


  • Yes your description of pernicious anaemia is right. Intrinsic factor is secreted by the stomach then 'binds' with B 12 foods in order for such to be absorbed in the small intestine. If absent B12 jabs are required to get the vitamin directly into the blood no amount of oral B12 ( either foods or tabs) will have any benefit whatsoever

  • I understand that the 4 samples now being taken are from the 'bulb' are more accurate than from the rest of the small bowel. If there is no evidence of coeliac disease in the samples then it may be you are chasing a diagnosis for something you don't have and missing something else.

    Did you get a referral to a gastroenterologist prior to biopsy? I'd email/phone them for these answers if you think you are still in their care.

    If you are still unhappy, find a new GP.

  • When I got my endoscopy the nurse who did it said I my gut was so swollen It was majorly damaged but I also came back negative for cd & was diagnosed ncgi. I have been gluten free ever since & my gut is miles better I had been ill for about 25 years and it was only by feeling better I realised I was ill if you know what I mean!

    I was told I had gastritis which means pernicious anaemia hence the low b12 will be on injections for life.

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