IGA levels, diagnostic.

[jbouch]

I've recently had a blood test for coeliac disease which came back as >250 above high reference limit, my endomysial antibodies also showed strongly suggestive of coeliac, does this mean that I am most likely to have coeliac?

[virgolizzy]

It would seem so, but the gold standard is to have an endoscopy too to confirm diagnosis. Once officially diagnosed they then aim for your TTGA to be below 10. Of course you need to be eating gluten to have the endoscopy & if you have already given it up, you may not want to reintroduce it & you may not be bothered about having an official diagnosis, as the end result is the same...no gluten. Good luck

[jbouch in reply to virgolizzy]

I've continued with gluten throughout. I've got my endoscopy on Saturday thank goodness. I've never felt so ill as these past few weeks so it can't come soon enough. My ema says positive, and strongly suggestive of coeliac and my IGA like I said before was >250. It's quite confusing as there is a lot of controversy on whether these tests are accurate.

I think it's quite easy to get lost in information on the internet.

I just wasn't sure if other people's results were as high.

I'm hoping it is the diagnosis as I don't know what else it could be and why my antibodies are so high.

As far as I can tell these tests are aimed specifically at coeliac. I've read that anything above 10 times above the normal level means villious atrophy and mine are 25 times the level and my result says above high reference limit, which I don't know what the high reference limit is. It's quite scary really .

[virgolizzy in reply to jbouch]

Even if the endoscopy comes back negative, the only way you will know for sure is to give up gluten & see if you feel much better. It is a long road for many, as you may find other food bothers you too & you become very good at listening to your body. a very useful website I find invaluable is purehealthclinic run by micki rose. Good luck with the endoscopy & look forward to feeling better.

[jbouch]

Thank you, fingers crossed

[Regalbirdy]

Hi jbouch,

My antibody levels were skyhigh as well - so yes, I also think you'll probably be diagnosed as a Coeliac. For the reference range they use in my local hospital, normal is 10 and below.

Having undergone the same process as you are now, I really do understand how unwell, uncertain and possibly frustrated you may be feeling. Waiting around for the next step definitely plays with your mind - and I also remember wanting it just to be all over asap. However, I promise all is going to be so much better again, given time.

The day after my endoscopy I gave up eating gluten. I didn't want to wait for the official results - because I had nothing to lose either way! If I wasn't a Coeliac, I could just go back to eating gluten; and if I was, I had made the choice and retained control about how and when I went gluten-free (it also meant that I started getting better sooner...!). In addition to this, I was also able to ask more intelligent questions of the dietician who saw me on formal diagnosis because of my initial gluten-free experiences.

I hope you're using the time between now and Saturday to eat all your favourite gluten containing foods. It's a good opportunity to get your head around the fact you could be saying a permanent goodbye to them if you're diagnosed. Whilst there are many good gluten-free alternatives to a lot of foods; if you like Maltesers, Twix's, Ferrero Rocher, Horlicks and doughnuts etc; now is definitely the time to have them.

Good luck on Saturday. I hope you get the answers you need.

[jbouch]

Thank you, my head knows it's coeliac, I'm trying to eat things I like but it's making me sick at the same time. I keep having little thoughts of maybe I'm not coeliac but whether that's a bit of denial I don't know. I think the fact my blood tests were so high says it all. I've also read if your IGA is high and ema is positive it's a cert.

[Regalbirdy in reply to jbouch]

Believe me when I say that I understand that as well!

After my blood test came back positive, I knew the result made a lot of sense of all my symptoms. My family however; were much more in denial and caused me to doubt the result.

I also felt like I was in limbo whilst I was waiting for the endoscopy to happen. In the end, it was a big relief to have the diagnosis confirmed by the biopsies they took.

A few days before my endoscopy, the penny really dropped that the gluten foods I was eating (and liked so much) were the reason I was feeling so drained and rough. It made them so much easier to give up; however in hindsight, I'm very glad I took the time to eat them and to make that connection. Looking back now, it was almost a form of aversion therapy! It's made sticking to the GF diet a lot easier - no unfinished business with gluten foods!

As for the blood test: for someone who has full-blown Coeliac Disease, the TTG antibody test is said to be reliable 95% of the time. It's significantly less reliable if you are in the early stages of Coeliac Disease. With the result as high as yours, I would be quite surprised if you were to be diagnosed as being in the early stages. However, do remember that I'm a Coeliac and not a medical expert!

Take care.

[jbouch]

I think I've had it quite a while too, I've been back and forth to the doctors about my stomach for the past couple of years at least. I ended up at an out of hours Gp because of stomach pain and straight away he said you need testing for coeliac disease, he didn't even know me. I think some GP's need educating more on coeliac disease and other symptoms that are not text book. When I complained to the practice manager as to why I hadn't being tested earlier, she said because the doctor said said you had pain in your stomach which isn't a classic sign. I strongly disagree with the fact that most coeliacs have abdominal pain.

All I want is a diagnosis and to start feeling better. Can't wait to get my life back, I've forgotten what normal is.

[Regalbirdy in reply to jbouch]

Hi,

I agree that many GPs still lack an appropriate level of awareness of ALL the symptoms relating to Coeliac Disease.

If you will allow me to offer you a further word of advice: going on a gluten-free diet will only be the start of the journey back to wellness - should you be diagnosed. I suggest you may want to measure any improvement in your health in months rather than in weeks (although you do feel some improvement quite quickly after going GF).

Once diagnosed, remember to encourage your GP to test for all types of anaemia (B12, folate and Iron) and you should keep a close eye out for any result that looks borderline. This could include your thyroid, zinc, magnesium, B vitamins, or even your cortisol levels etc. Do chase up and question anything you're uncertain of (I sooo had to learn that the hard way...).

Also be aware that you will probably need to have a DEXA bone scan to check for osteoporosis.

Sadly and unfortunately, Coeliac Disease after-care can be worse and more frustrating than actually getting the diagnosis!!

I hope you can get back to normal soon. In the meantime, get as much rest as you can.

xx