Coeliac disease question

[islandgirl1986]

Hello again. Here's another question.

I have been tested for celiac disease some 6 years ago by endoscopy and blood test. The endoscopy was done whilst I was awake and the hospital doctor said all was fine at the end of the procedure. Nothing was mentioned about a biopsy, now I wonder if they actually did a biopsy. They were keen not to sedate me at the time. A celeb had an endoscopy with sedation to check her already diagnosed celiac disease, and it got me wondering if I really may have a problem. I have quite bad bowel probs ie loose bowels and feeling absolutely empty and fatigued after a bowel motion. It was mentioned to me during consult with endos that I may not absorb well. Any advice gratefully received.

[Barrister]

You can still be gluten/ wheat intolerant without a coeliac diagnosis. Why don't you try going gluten free and see if it makes a difference to how you will feel? That way you will know for sure. That's all you would do if you were diagnosed. Clemmie

[islandgirl1986 in reply to Barrister]

Yes you're right. I would just for once like to have a definitive diagnosis and am considering asking doc to test again, as it's been a while. I'm not sure will be in favour tho, as I had endoscopy about 4-5 years ago. Been trying to cut out wheat, gluten, sugar and dairy too,quite difficult but recommended by private doc. Thankyou.

[Barrister in reply to islandgirl1986]

Well if you cut it out and feel better then a few weeks after that try something containing gluten and you feel ill, then that's definitive. my husband was told to give up gluten because he was so unwell. After 10 days he felt on top of the world and said he didn't realise how ill he had felt until he felt better. Ten days isn't long to cut something out to see if you feel better, is it? You could just think of it as a detox lol! Personally, I'd rather do that than go through another gastroscopy! Good luck with whatever you decide. Clemmie

[islandgirl1986 in reply to Barrister]

I'll have a go....again. I keep up for a week or so then get weak and eat something I shouldn't. I'm hoping it will help with antibodies to my thyroid. I think it would have to be a permanent change for me, but I need to do it. Thanks again. Deb.

[BeansMummy in reply to islandgirl1986]

I agree about having a definitive diagnosis, it is something I would like for various health issues - you know what you are fighting if you know what you've got!

[Chancery]

Hi Islandgirl. Have you ever had coeliac blood tests? You could always ask to have them done, since it is so long since you had an endoscope, coeliac could feasibly have developed since then. Blood tests are non-invasive (relatively speaking!) and your GP can do them straight away. That way you'd at least get a more up-to-date result. It is possible that they never did a biopsy, not because they didn't sedate you, although that is unusual, but because the surgeon telling you it all looked okay is because they check it visually at the same time. If he doesn't see flattened villi then he'll 'know' that you don't have it just by looking. As long as the camera went down your throat, sedation or no, they did look inside your gut.

However, your doc should have been sent the test results. It's easy enough to ask for a copy of them. They'll charge you, but you are legally entitled to them. Likewise you should be able to get them from the hospital. No need to suffer in suspense! That way you will know for sure if they just looked or if they did a biopsy.

[islandgirl1986 in reply to Chancery]

Hi Chancery. Went to gp y'day as having sharp pains in my ear and throat. Said my ear is inflamed and given me a spray. I asked him about endoscopy and yes they did biopsy. As you said the doc doing endoscopy did say the villi were fine, but gp has given me a blood test form and told me to go in a weeks time, (others are saying I will need to leave the test for 6 weeks, which I will do) making sure I eat plenty of gluten, as I have been trying to eliminate it from diet for long time. Thankyou

[Chancery in reply to islandgirl1986]

It's a good idea, and yes, you need six weeks to get gluten back into your system. You could always do what I did and eat wheat as often as you can. I was eating it at every meal, and eating the worst wheat I could, nasty cheap white stuff! That way you will push the antibodies up as high as they can be and if the results are still negative then you know you are absolutely fine. If the antibodies don't react to that punishment then they won't react to anything!

[islandgirl1986 in reply to Chancery]

My mum brought a cream cake yesterday and I had toast for breakfast. All wrong for my problems and fully expect adrenals to get worse. No more cream cakes, but will keep up with as much as I can. Have sausage roll for today and will eat some bread for breakfast. It is funny, I crave toast most days, but now really don't feel like eating it, must be guilt. Thankyou.

[Chancery in reply to islandgirl1986]

You're doing the best thing you can - not often you get to say that about eating junk food! Hope it all comes right for you and you get a good, clear-cut answer. X

[islandgirl1986 in reply to Chancery]

Thanks. Have had really aching tum today, tho it may be coincidence. Taking iron for last 3-4 weeks, seem to have problems with most things I take. x

[Chancery in reply to islandgirl1986]

Cream cakes, sausage rolls and toast will do that to a girl - especially a sensitive one! Stick with it; it will all be worth it in the end...

[islandgirl1986 in reply to Chancery]

Hope so. More toast anyone?