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Triomam

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About Triomam

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  1. I agree...the search for answers is complex.... My TTG IGA is over 300..... But a biopsy said negative. Yet the difference gluten-free is startling! I'm not yet back to fully well...but compared to how I've been its unrecognisable..... Good luck
  2. 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 expert...you 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 celiac disease..... Thy came back off the scale for TTb IGa as over 300. But ema Iga negative. Sent for endoscopy. Endoscopist said def celiac disease 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 ...in short....help...where 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 celiac disease and I know an endoscopy will not always find damage (4 samples taken)..... Ives been gluten-free 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 underneath...my 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 good.....now 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 welcomed.....as if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!? Thanks loads experts....,
  3. 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 expert...you 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 celiac disease..... Thy came back off the scale for TTb IGa as over 300. But ema Iga negative. Sent for endoscopy. Endoscopist said def celiac disease 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 ...in short....help...where 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 celiac disease and I know an endoscopy will not always find damage (4 samples taken)..... Ives been gluten-free 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 underneath...my 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 good.....now 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 welcomed.....as if my biopsy IS negative with a TTG IGA that high and also now b12 deficient,,,,,if NOT celiac disease....what else..!!? Thanks loads experts....,
  4. DOH...SORRY! TTG IgAa above 300 but TTG igg which was negative.....
  5. I was wrong...my TTG IGA was above 300..... But it was a TTG IGA which was negative.....anyone have a positive IGA a but negative IGA. Thanks loads. Still learning.....
  6. Thanks everyone.....I think I'm just frustrated and tearing my hair out. I've been clinging on/surviving life (wk, children etc) since being so unwell for last year. On paper my TTG IGA over 300 is way off the scale. My GP said so, the forums say so, the endoscopist said so...then at an appointment yesterday my GP (who is lovely...but clearly knows little about celiac disease-neither did I until ove been reading about it due to this!) kept saying.....but one of your results was negative for that...so it probably isn't..... Eh?!?! Last time she was certain, the endoscopist seemed to think def celiac disease whatever the biopsy shows (as could get a negative patchy sample)....... I think I'm just worried about what is the biopsy is negative .......with a TTG IGA of over 300....it doesn't seem like it can be anything else?!, ;-(
  7. Hi I was at my doctors today as I've been really unwell over the weekend. My TTG IGA aria over 300-! D I had a biopsy last week and am waiting for the results. My GP mentioned today that my 'other test'...which I'm presuming is EMA, but I don't actually know, is normal for celiac disease. He anyone else had one sky high positive result and another normal and been diagnosed with celiac disease? Thanks
  8. Here in the UK I believe over 4 it becomes a possibility. Over 9 they start to consider a biopsy is considered....I'm not yet diagnosed as I'm waiting for my biopsy results....but my TTG IGA is over 300. Hope you get sorted.
  9. Ewwww horrible thought re being contaminated coffngl!!!! Thanks wintering......same as me.....range went to 300 and I'm somewhere over that.....struggling though to eat well gluten-free. I work long hours and am by myself with my children.....by the time they are in bed an I have to think about food usually it's bad enough...let alone trying to think if gluten-free new things...being veggie probably doesn't help ..... I'll get used to it.....
  10. Thank you all so much...... Winter song....your reply says your TTG was off the charts.what was it? Thanks
  11. Hi all So I had an endoscopy for the first time yesterday morning after very high TTG IGA readings. I was ok afterwards...just a bit sore. Bbt I've been up all night with awful stomach pains and bloating. Today I look and feel like I've swallowed a football and am really uncomfortable and have a banging headache. I was awake,,,,,I didn't have sedation. The only thing I ate yesterday was a salad...as I couldn't eat before it and didn't want anything afterwards until tea time. Anyone else? Thanks
  12. Hi Thanks both of you.....as I'm in England the biopsy is how they agree a formal diagnosis.......so not really a choice here! Although like you've said.....a positive biopsy confirms but a negative doesn't rule it out with a TTG IGa over 300! Almost certainly just means they'll have taken a biopsy from a 'good bit' that's how it is over here!.....if, as it seems, almost nothing else causes such a high TTG IGA......(hardly a borderline result!) it almost seems mad to do an endoscopy.....but so be it......I'm at the stage where I hope it confirms it...so that I have the answers.....as a I suspect if it doesn't confirm it...ill end up being advised to stay gluten-free anyway! Started today......as my nos are so high I was told I might as well start as soon as my biopsy....as it's likely...so why put it off...... Although being veggie...I'm not quite sure what I'm going to eat!;-). But it could be worse.....so can't complain Thanks
  13. Hi all I've just had my waited endoscopy. My TTG IGA is above 300 and my gp and endoscopist both think celiac disease highly likely with a TTG IGA that high. The endoscopy didn't show visible damage, but I know that is why biopsies are done. So I was wondering.....what did your biopsies show visibly, then via biopsy compared to Your TTG IGA scores..... Thank you
  14. Thanks again such all of you..........the information and personal experiences are fascinating ...ESP considering. I've yet to see a doctor, I'm in England and it seems systems are very different...;-)
  15. Thank you everyone for all of that. Much appreciated...... Here diagnosis is based on biopsy not only bloods and at the moment I've not seen a single doctor about coeliac.....as based on the extremelych go TTG IGA I've been sent for a biopsy and bypassed seeing a consultant......I'm told I'll see one when my results are back....so I'm completely in the dark in every perspective.....except for knowing I've got a very high TTG IGA after beicomming really unwell. I'm really hoping the person doing the biopsy will at least be able to answer a couple of basic questions...as I really want to stop gluten straight after the biopsy and not wait to see a consultant....as I'm sick of feeling so poorly and exhausted..... Anyway...could be worse!! Did anyone else have other odd blood results? All this came about because I lost so much weight and was so exhausted that I had blood tests. They came back with quite a few low results so needed to be urgently repeated...at which point they also added in the TTG IGA one.... So I had abnormally low platelets (and bruising), very low neutrophils and also my overall white blood cell count a as also very low...all low results were below the 'normal ranges' for each element. Has anyone else presented like this? Thank you in advance.......