Did I really have coeliac

[Littleone123]

Hi there I was diagnosed "coeliac" had a biopsy and it was confirmed when I was 16. For 6 years I was 100% wheat free. The worst 6 years of my life. My skin was poor I lost teeth because they broke was depressed felt incredibly lonely and went down to 6 stone and was always sick tired felt crap. I suddenly decided I can't live like this anymore so re introduced normal food back in my life I am now 31. My skin is great I weigh a very healthy 8.6 stone. My teeth are back to normal I feel amazing. I had another biopsy last year and guess what no sign of disease. I now wonder was I incorrectly diagnosed.

[jbouch]

There wouldn't be any sign of disease after all those years as the intestine heals itself . You may find you become symptomatic in the future.

[Asmarino]

I believe you were wrongly dizgnosed. Anyway good news. I would suggest that you limit the bread and pasta intake.

[Regalbirdy]

Hi Littleone123,

Do you mind me asking what the result of your last Coeliac TTG blood test was? And how long ago it was taken? Was the result below 10 (ie. in the normal range)?

I really do hope you were mis-diagnosed and having no damage showing up on the biopsy is really good news for you.

Take care of yourself.

[weee]

Well it certainly sounds as if you were misdiagnosed. Coeliac cannot be cured only managed with a gluten free diet.. As Regalbirdy suggested, were your blood tests normal too?

[Littleone123]

Yes my blood tests and follow up endoscopy were all normal. Unfortunately I don't know the specifics of the blood tests. I made sure I got it checked 7 years after going back to gluten. Just to make sure and my doctor couldn't even work out what was going on from diagnosis. I'm now 31.

[Chancery]

Well, it certainly sounds like it, Littleone. I reckon you should sue!

[Jacks]

Not all villous atrophy is coeliac disease. I've mentioned this in previous posts:

Here's a simple list:

cureceliacdisease.org/archi...

You don't outgrow CD so embrace the fact it wasn't that.

[Jill121 in reply to Jacks]

Hi Jacks, I read your reply with interest as having been diagnosed with coeliacs a few years ago and strictly sticking to the diet my blood still shows I am eating wheat which im not, I also have some diary intolerance as in i can drink milk in tea but not a milk shake i can also eat chocolate, how would I go about trying to find out if I was wrongly diagnosed with coelicas , can you advise please, Thanks

[Jacks in reply to Jill121]

I've never done it and don't know anyone who has, but you can ask to see your medical records. There is some info here:

nhs.uk/NHSEngland/thenhs/re...

Lactose intolerance occurs with a lot of atrophy and you could have post-giardia lactose intolerance symptoms.

I'm lactose intolerant from coeliac disease but my gastro once said that there's a limit to how much lactose an adult can manage in a day and the amount you mention is quite substantial ('cause really we're not supposed to drink milk after weaning). In the West we drink a lot of milk so have developed the ability to digest it but that is not the case in most of the World's population.

Still eating wheat - you wouldn't believe where it is, even chocolate! The new labelling where it has to be in BOLD is quite a quick useful aid.