Please Please Help....advice Re Diagnosis And Experiences......next Steps!?!

[Triomam]

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....,

[cmc811]

When was your endoscopy? My dr told me my endoscopy looked normal, but we were waiting for pathology to look at the biopsies. Could the receptionist have reported the "normal" result without having the pathology report? technically, she shouldn't have given ANY results since she's not qualified to do so, but that's a whole other topic.....

 

Regardless, if you ttg was that high and you feel better gluten-free I think that's your answer

[cmc811]

Also you could ask for a gene test. Some docs will make diagnosis without positive biopsy with a ttg that high if the gene test is positive and your symptoms are resolved by a gluten-free lifestyle.

 

Maybe keep with the diet and have repeat labs in 6 months to see if you're absorbing more nutrients as you heal?