A little advice please

[Vikie]

Hi

I'll try to keep this brief but it's gone on for years so I'll try to summarise:

29 year old female, 

- since the age of 14 ish back and forth to doctors with lethargy, gi signs, and intermittent episodes of being a bit down in the dumps

- whilst at uni 21-26 years old symptoms progressed, diarrhoea urgently and without warning most days, increased wind and bloating, very exhausted, episodes of constipation and embarrassingly  fissures and haemorrhoids 

- now 2 years into my post uni life and really not coping, met a sympathetic doctor last year who said my haematology was borderline anaemic so she did some further tests and I was both b12 deficient and iron deficient.

- my bloating nausea after certain meals and diarrhoea 4+ times a day is unbearable and sometimes cramping so painful it stops me in my tracks 

- intrinsic factor, parietal antibodies, calprotectin, coeliac bloods all negative 

- gastroscopy and colonoscopy - consultant not 100% sure says found lots of bile not being absorbed, and on the biopsies some areas of villi damage and I can't remember what else (possibly neutrophils) but not enough to diagnose coeliac disease. 

Dietician suggested a low fodmap diet, while I was on this with gluten free component symptoms better, added back in gluten and I've struggled. And this week I've been eating Aldi wraps and not sure if wraps contain more gluten then my normal wholegrain bread or not, but I've been in agony?

 

Are there other tests that can be done? Anyone please help? Am I intolerant? Is it something else I'm missing?

 

Thank you and sorry for some of the tmi above! 

[tessa25]

Get copies of your test reports and see if your testing was thorough and your results interpreted correctly.

 

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

See if they ran all of the blood tests.

I once had to show a doctor the report line that said I had a full ACL tear after being told I was fine.

 

Oh, and you can always go 100% strict gluten free once you know all celiac testing has been fully done. If you get better you have your answer