Confused...

[Mariea Profile]

Hi all,

Just wanted to know the story with biopsys - I got one to be diagnoised (3 years ago) & then one 6 months (2.5 years ago) afterwards and that was it. I have been reading here on the forum & people talk about 'regular' biopsy's - are we supose to go & get one every so often aftwards?
Also, do you have to get regular coeliac blood tests? I did at begining but when it came down to acceptable levels (2 years after going GF) and then I stopped requesting them.

Would like to know the correct procdure as Im feeling good & would like to keep it that way!

Thanks in advance,
Mariea

[js25292 Profile]

Hi Mariea,

i think the process is you get a biopsy to get diagnosed, go on GF diet, then you get another biopsy after you've been on the diet to ensure your adhering to it and the mucosa have returned to normal this is usaully 12-18 after going GF, after that you should stay compliant and get your TTG/IGA levels checked at least once or twice every year so that you know its not going up and hopefully going down as close to zero. I think after that its supposed to be or so the consultant told me a biopsy done every 5 years and dexa scan, i presume different docs/consutants have a different approach but this is prob the right way.

im over 2 years on GF diet, and my TTG/IGA levels were at 83 when diagnosed, and the latest blood test is at 5.4 frustratingly slow (But i had lymphoma in between so prob slowed recovery down chemo etc), but i got a biopsy done bout 10 months ago and the mucosa had returned to normal, so im obv just sensitive as i do follow the diet.

hope this helps.

[sq Profile]

Hi,

It seems every doctor and consultant is different and has different ideas on coeliac. I live in Waterford, was diagnosed 8 years ago when I had bloods and following that a biopsy to confirm diagnosis and that was it, no follow up to see if my bowel had healed.

It was this time 8 years ago when diagnosed and have had no follow up whatsoever. I have asked my doctor on numerous occasions if i should have a biopsy but he researched (so he says) and decided there was no need. I was recently on anti acid tabs for tummy problems, pain, diaorrah etc but even then I was told I didn't need a biopsy. I also asked about a dexa scan but again was told there was never a need.

[dg Profile]

I have felt unwell recently and I am a sensitive coelic. My TTG was low 0.6 (negative) and all my other bloods normal. I am lucky that my Gastro agreed to rebiopsy (I have private health insurance). I have low grade gut damage. Hence the unwell feeling. Disgusted as I am very strict with diet...........and now fine toothing everything from what I eat to my meds. All I can come up with is ? oat fibre in Kelkin buck wheat flakes (a new diet addition) and so far my meds have been deamed GF)
So if in doubt push for bloods to be checked - ideally yearly and if needs be biopsy. With a normal TTG - I'd assumed that all was ok. Trust your gut!

[mar mayo Profile]

dg - i eat the kelkin buckwheat flakes - does the oat fibre in them mean that they could be damaging the gut even though they are 'gluten free' - deva cos i like these mixed with GF cornflakes for breakkie!!!

[jess Profile]

I was diagnosed 5 years ago totally by accident! Was having scopes for something totally unrelated and evidence was found. After that I was left to go my merry way until I had other problems and was referred to the coeliac clinic in Tallaght hospital. I have been going every 6 months for the past few years but they never discuss my bloods with me. They got me to have a biopsy a while back - related to this new problem - and all evidence of CD had gone. Would never have known if this new issue hadn't cropped up. They decided to do a Dexa scan as well (why? my current problem wouldn't have anything to do with that. Think they just don't know). My gp sent me for a dexa when I was first diagnosed with CD and everything was ok on that score.
I'm happy that all has healed. I must be doing something right with the diet
It's all very hit and miss with the medical profession with regard to CD, in my opinion. There seems to be no adherence to following guidelines for diagnosis or after care.

[Mariea Profile]

Thanks everyone for your replys it seems that there is a different rule/opinion depending on the doc you attend.
When I found out I had CD I had to push for a Dexa scan with my GP, which was fine, thankfully.
I also had to convience the nurse to do coeliac blood tests afterwards, to monitor my TTG levels (took over 2 years to go down to normal)- she had no idea of this I had to explain it to her - I think she just thinks I am an arkward paitent now - oh well may as well be 'awkward. and healthy!

[dg Profile]

Oats even if GF are an issue for some coeliacs and from personal experience! I did try oats GF a few times here and there but always felt iffy so I stopped them........ I started feeling unwell a few months back and was blaming a gasto bug (not standard garden variety) that I came in contact with but appeared not to get (no vomiting/nausea) so I went back to see the gasto ( I work in health care............) for his opinion. He said scope (bloods NORMAL) incase it was an ulcer of H.Pylori and will all appeared well on scope - the histology from the biopsy showed gut damage!!! Only thing I can blame is oat fibre in a breakfast cereal..... So while oats GF may be tolerated and show no symptoms on the outside I'd be wary of what is going on inside.

[indigogirl Profile Website]

I find that yes the healthcare you receive can be very hit and miss. Thank God for the internet and this forum because it really armed me with knowledge so that when I went initially to my GP at least I knew what I was talking about. Also over the last two years since being diagnosed I have learned so much about my condition and what tests are needed etc.

I must say I don't find the coeliac clinic that I attend annually at James's st much help. There is usually over a two hour wait to see a consultant for a few mins. Having said that I am a public patient and maybe my experience would be different if I was private. I only had a biopsy on diagnosis 2 1/2 years ago and have been told I don't need another one.

Having requested a Dexa scan from my Gp this was done Nov 2010. The nurse who did it said I would be notified through my GP if there was a problem. I heard nothing and just presumed that all was ok. I went back for my annual clinic visit to James's to hear that I actually have ostopoenia!!! I had to then ring the clinic to get them to send the results to my GP as she had heard nothing. It seems now that my left hip is quite bad and has a moderate risk of breakage and I am only 39!!! My GP has now referred me to the bone clinic in James but said there's a really long waiting list. I wish they had sent the results last year and I could have started working on preventative measures then.

So...I don't know.I am very disillusioned with the whole medical system. It seem if you can afford to go private you get much better care. I have heard people on this forum talk about dieticians. I presume that you only get one of these if you have private health cover as well as I have never had an appoinment with one. The blood tests I request myself at my GP office.

I think that we have to be very proactive with our care. I am not a very pushy person by nature but when it comes to our health and wellbeing I think that in this country anyway we have to be. Sorry for rant

[ppstokes Profile]

Indigogirl, your rant is a bit understated.

Most of the problems you point to are due to the two-tier healthcare system we have allowed to develop in Ireland. If you have the money, you get instant results. If you are a public patient, then "tough".

In Germany many years ago, there were riots in the streets when a newspaper wrote about how just being less well off meant you would live a shorter life. Elderly folk, who are more likely to vote in elections, took to the streets in protest. Things got a lot better after that.

Nothing changes here, however. Not for the better, anyway.

[dg Profile]

I agree that the health sector needs a lot of work to be improved for all users. Thats from some one working in it!

[Mariea Profile]

Hi all,

I know I started this post last year but I would like to clear something up:

I got my bloods done in Jan 12 & they cam back at 16 - apparently anything under 20 is OK/normal according to my surgery. This was after the nurse asked me “Mariea, you’re diagnosed with CD, yes? Then why are you getting you bloods done when you already know”, I had to explain AGAIN (think 3rd time now) how its important to keep an eye on your levels etc…I get so frustrated having to explain things over & over & made feel like a hypochondriac!

Anyway, rant over! I just want to know is this level ok? By readying other replies I think it is a bit high. To be honest I don’t know how much more strict I can be (however I did eat GF dinners in other people houses over Christmas so maybe some gluten sneaked in?! – even thou they really did try to do all GF).
Also, how long do you leave it to get bloods checked again to see if they have gone down to a lower level (am dreading explaining to the nurse again!).

Thanks in advance