TTG IGA levels and biopsy-your experiences.....

[Triomum]

Hi

I recently had some blood tests after being mind numbingly exhausted.....my TTG IGA was above 300......so I'm about to have an endoscopy.

What were others TTG IGA scores pre diagnosis? Did anyone get verbal feedback at the biopsy about what was seen....(and how was the endoscopy!!,) or do you always just have to wait for results.

Thank you all

[Regalbirdy]

Hi Triomum

If your result was over 300, no wonder you're exhausted! I was told that normal for me is 10 and under; but I I'm not sure if all hospitals use the same unit of measurement. I also was not told what my reading was at the time of blood test but found out subsequently during follow-up appointments post-diagnosis. I think my hospital stopped measuring at around 128 and I don't think they were sure how far beyond that I actually was. All I know is that like you, I felt pretty lousy.

My advice would be to push for a biopsy as soon as you can, even if it means travelling slightly further afield geographically than you would prefer.

The endoscopy was okay. It was a means to an end and a way of getting officially diagnosed with Coeliac Disease. I chose the throat numbing option because I wanted to get back to normal as quickly as possible (and do things like drive the following morning). Others will tell you they opted for the sedation. At the end of the day, which one you pick is very much down to personal choice. I liked being aware of what was happening but some people don't want to remember the experience. I would say the ability to stay quite calm really helped me.

Officially they are not allowed to give you your results there and then as that is a consultants job. My team were very nice and let me see the pictures they had taken of my guts. Strictly off the record, they hinted that the diagnosis of CD was likely be confirmed. I really appreciated them going the extra mile and bending the rules a bit, because by that time I was desperate for information. Please don't expect this though!

I went gluten-free the following day and have never looked back.

I had the formal appointment with the consultant just over a week later and my initial overriding emotion was that of relief when the diagnosis of Coeliac Disease was confirmed. This may sound slightly odd but at that point I also felt validated - that what I had been going through was real and had a known label.

As you may be aware of by now Coeliac Disease has a lots of physical symptoms; and it is right that people focus on these first. What took me a bit by surprise was also how I reacted emotionally in the first few months following diagnosis. I found it socially a little isolating and very embarrassing having to explain to friends, family and colleagues that I really couldn't accept that biscuit or piece of cake that they were offering; or eat in that particular restaurant any more. However the good ones understood and adapted to my needs very quickly.

I can report that things have very definitely got a lot better with time. 15 months on from my endoscopy, I feel like a completely different person. For one thing, just being able to think clearly most of the time is so nice!

It takes a few weeks to get your head around actually going totally gluten-free but it is definitely worth it.

Good luck with your endoscopy, please let us know how you get on.

[Triomum]

Thank you SO much for all of that...;-). My endoscopy is next week and like you..I'm aiming for no sedation...as easier than managing sedation and life/work etc... I'm hoping like you that of it comes back that I am..that actually it'll just be relief.,,,it will make everything make sense and most importantly means I can start to feel well quickly. I find it so confusing that I can feel half human and then appalling...ESP regarding exhaustion. It's really hard trying to explain why I feel so terrible exhausted....no-one really understands.....feels like I'm being lazy....or even worse...a hypochondriac.....so whilst I don't want CD...to know there is a reason...one which makes sense and one which thank fully is easy to overcome....will simply be a relief.....

I've read that a biopsy might show atrophy or a mosaic pattern......what did yours look like?

Thanks again

[Regalbirdy]

Hi

They told me I had total villius atrophy - i.e. full-blown Coeliac Disease. Looking back with the benefit of hindsight, I suspect I should have been diagnosed as a child over 35 years ago. I now think I had grown up with it and because of that knew no difference.

Then one day the tiredness and brain fog finally got too much to cope with and I happened to mention it to my GP whilst at an appointment for a completely different reason. To his credit, he did all the right blood tests and the rest as they say, is history.

What you said about people not understanding and feeling like you are being lazy completely strikes a chord with me - I felt exactly the same pre-diagnosis. To the big wide world you still probably look fairly normal, but I'm guessing the effort you now need to keep that front going is huge. Concentrating on tasks at work was a nightmare for me and I was forever getting behind with the writing of documents. I felt so incompetent!

I agree that that few people really do understand. I found most were sympathetic but clueless. My brother even told me I was worrying too much after my blood test came back positive!

My boss expected me to get better very quickly once she knew I had a diagnosis. The reality was a little different to those initial expectations. It's true you do start to feel better after only a few weeks, however I found going GF wasn't a quick fix solution. The gut takes a quite a while to heal, so for me it's been a rather slower more gradual month by month improvement.

Btw, during the endoscopy you may find you gag a little. Try not to worry about it too much - it's a normal reaction to having the camera down. They work as fast as they can and I found that focusing on breathing through my nose helped me stay a lot calmer. A couple of minutes and was all over. I seem to remember I was in and out of the endoscopy room in around 10 minutes - throat spray included.

If your diagnosis does come back positive, you may have to learn to start negotiating with your GP fairly quickly regarding vitamin deficiencies. Many Coeliac's have them on diagnosis and I found it was one of the things making me feel so ill. Try not to let your GP fob you off (however well meaning) by saying "don't worry it's on the low end of the normal range". Unfortunately very few GPs are specialists in the specific needs of a newly diagnosed Coeliac. In my experience your B12 level especially, should be towards the top end of normal; and if it isn't (as mine wasn't), I found that chomping on huge doses of B12 in tablet form didn't help at all. As a newly diagnosed coeliac you can't absorb enough B12 via the guts properly. If you happen to find yourself in the same situation, try to push for B12 injections straight away - I learnt this one the hard way

[Regalbirdy]

Yikes! The last post was so long that it cut the bottom of my message off!

I was also going to say watch out for Calcium, Vitamin D, Iron and Folic acid deficiencies as well - again do ensure these are checked asap. Tablets do help more with these though.

Be aware that you will need to get a referral for DEXA bone density scan done if you do have CD. My GP made this referral for me, although I think the hospital consultant will also sometimes take care of this - ask about it when you get your results, it may speed things up.

Sorry about another long post!

Best of luck - just keep hanging in there!

[pretender]

Pre endoscopy the only bloods done were IgA positive, I have family history of CD plus a previous diagnosis. Once I removed ALL ingredients from a gluten source they came out with ttg=0.9, IgA=negative, IgG=negative. My second biopsy 5 years later = Reduced folds, D2. Bloods = HLA-DQ2, AGA=42. All under control.

[BellaC79]

Hi triomum, like you my count was >300. I was shattered all the time has joint pains, sore hands and feet which has now been diagnosed as small fibre neuropathy. Upon seeing the gastro consultant he told me I most certainly had coeliac with that count and just wanted the gastroscopy to confirm. This was two weeks later i opted for sedation with the spray...didnt remember a thing...funniest thing was when i came around they offered me tea and a wheat biscuit...noooo. I declined the glutenous biscuit. They found I had patchy villous atrophy with a marsh grade of 3b. I had to chase the hospital for my results which took a month but I went gluten free immediately after the proceedure and felt better. It did take a while to get used to the diet and learn what you can and can't eat. I also needed vitamin d and calcium tablets. It did take 3 months for the incredible fatigue to go but I still am not back to my old self. But am much more comfortable in what I can eat and know that avoiding gluten keeps me healthy! Good luck with the procedure

[Jacks]

Was told straight away as it was conclusive and shown the photos/screen. Good job really as it took the consultant a further 6 weeks to write!

[DrTomOB]

With a TTG as high as yours, there is consensus that Total Villous Atrophy is (depending on the study) highly likely to a certainty.

Recent guidelines, released by the European Society for Pediatric Gastroenterology, Hepathology, and Nutrition stated that intestinal biopsy is redundant in patients with high anti-tTG antibody titers (>10 times the upper limit of normal)

BMC Gastroenterology 2013, 13:19

The aim of our study was to check whether using quantitative t- TG serology the requirement for duodenal biopsy could be avoided by identifying a cut-off value of serum t-TG 100% specific for villous atrophy in a cohort of adult patients with suspected CD

Digestive and Liver Disease 44 (2012) 280– 285

Serum t-TG concentration 3–5 times greater than the u.l.n. (upper limit of normal) is 100% specific for villous atrophy

Digestive and Liver Disease 44 (2012) 280– 285

Tissue-transglutaminase antibody level 5-folds above the upper limit of normal is 100% specific for duodenal atrophy and using this cut-off biopsy could by avoided in 1/3 of patients.

Digestive and Liver Disease 44 (2012) 280– 285

Our results are almost identical to those obtained by Diamanti et al. in 186 pediatric patients showing 100% specificity for t-TG, 3 times the u.l.n, and with those of Hill and Holmes showing 100% specificity at 4 times the u.l.n.

Digestive and Liver Disease 44 (2012) 280– 285

I will be presenting on the testing for Celiac Disease and Non-Celiac Gluten Sensitivity on March 12, 14 and 15 in Great Britain. The public is welcome to attend.

thedr.com/index.php?option=...

[Triomum]

Thank you to all of you for all of that....it is so reassuring to know I'm not alone...ESP to know that the feeling so exhausted is something others have had....as I often feel 'guilty' for it ...As if I had a Reason or a diagnosis then it would make sense...but for now I'm just shattered and with no reason..,,so those around me don't get it .........I'm off work this week in holiday and and feel human for the first time in as long as I can now actually remember...as I'm not battling to get up, be at work, look after my little ones etc....I'd forgotten what feeling half normal or half well actually felt like......mind...I've eaten almost nothing but gluten all week.....as I'm counting the days down until my biopsy...and expecting that this might be the last wk of my life ever that I can just eat what I what...cake, pizza, pasta.....being veggie..pizza, pasta and bread are a massive part of my diet....BUT if it means ill be well.....so be it!

See what next week brings....hoping they hint/let me know/can see CD at my biopsy.....been writing long enough....and hoping for real concrete answers at last next week...

Thanks all so much

[Jessiepup]

If the consultant is doing the biopsy he will tell you if there is anything to see, they also send tissue off for further analysis.

I was told at biopsy that nothing wrong except for severe thrush all the way down, which wasn't there until I did the Gluten Challenge and disappeared shortly after cutting it out again.

Due this and suspected malabsorption issues due to other deficiencies am diagnosed as Non Coeliac Gluten Sensitive.

I m happy with this as it is on my records, more than some people get.

I m assuming you will get a positive result though , good luck