Endoscopy

[AMJx]

Hi. I have at last had my endoscopy (delayed due to Covid). I went GF for 3 months (ish) while waiting then had gluten for 3 weeks leading up to it (was supposed to be 6 weeks but they got a cancellation and asked me to come in earlier). The endoscopy doctor said I had a smooth (slightly featureless) duodenum (he said this was common for coeliac). I also had a biopsy but results can take up to 6 weeks so assume I should just go GF until then as the pain is now almost unbearable in my stomach (right side). I also think eggs may be an issues but can only check this using an intolerance test. I assume once the results come back I will get some advice on living GF and any dietary issues I need to consider? My other question is about the hereditary factor - is it worth getting my children tested (15, 20 and 24?) if confirmed. Thanks

[essexgirl]

I didn’t have mine as there wasn’t any needs .. my bloods confirmed it so I just went GF and have been 11 years

[KidR]

Hi, i was diagnosed through a specific blood test a few years back. That might be a quicker way of finding out for sure. The smooth, featureless duodenum is a sure sign though. The villi flatten so absorption of important minerals and vitamins becomes an issue. I ended up with osteoporosis as a result of being undiagnosed for years. My daughter was having stomach issues aswell so got tested but was ok. I think it can be hereditary so would be worthwhile for your children to have a simple blood test to find out.

As diet goes I find it no problem until it comes to dining out.

You have to read the labels of food items in the supermarkets to make sure there isn't any gluten in the product. Might sound a no brainer but things like maltodextrin can be a problem. Take care and best of luck.

[AMJx in reply to KidR]

Thank you - I have had issues with B12 and anaemia for a long time and my mother had osteoporosis. Thinking this may be something to check for me as have major issues with my back and recently my knees joint! think eating out is a big concern and I have struggled with this since initial blood test. Thinks like contamination etc and always having to check in advance. Arghh

[essexgirl]

I joined CoeliacUK I pay £10 a year & I get a directory of all the supermarkets for what’s gluten free & an app for my phone and when I go shopping I scan the items I’m not sure of and it tells me if it’s suitable

[AMJx in reply to essexgirl]

That’s a great idea and definitely worth the cost!

[essexgirl in reply to AMJx]

It’s brilliant

[nellie237]

Hi AMJ, I have a recent diagnosis and have been doing quite a lot of research. Yes, if confirmed, you should get your children tested, but also if you have any siblings because the incidence is higher. I would suggest your children/siblings get themselves checked every few years.

If you haven't had them checked recently ask your GP to check Iron, Folate, Vit B12, Vit D and calcium. Mine didn't do this - I had to ask - and all came back deficient. Make sure that you get copies of the results with ranges.

Calcium is a bit more difficult than the others in that unless it is really out of whack it won't show in a blood test - if there isn't enough in the blood it will take what it needs from your bones.

Check for osteoporosis - I kept seeing that a Dexa Scan is recommended 1 yr after diagnosis - I understand that this is because after 1 yr it is unlikely to improve. So, 1yr from diagnosis......I believe usual practise based on risk of osteoporosis is to prescribe 1600iu vit D for 6 months + calcium dependent upon how much you get from your diet, although they may prescribe immediately.

Link below for Sheffield Univ fracture risk score - takes less than 5 mins to fill in. You can't put in a BMD score, but that doesn't matter - I filled it in a couple of weeks ago and sent it to my GP (I came out in the orange range) and I have a scan booked in 2 weeks, which will be a week after my 1st (and probably only) Gastro appointment.

sheffield.ac.uk/FRAX/tool.a...

Please let us know how you get on.

😊

[AMJx in reply to nellie237]

Thanks for this - it’s really helpful. I haven’t had any tests done in a long time so it’s definitely a good place to start to see if I need to take B12 and iron etc again.

[Hidden]

There's a gene test for ceoliac, so maybe worth your children having that, if the coeliac test comes back negative for them.

In terms of what to do now - lots of helpful info on here. Please check out any threads and comments on 'hidden gluten' - many learn that the hard way when they can't figure out why their not recovering.

[nellie237 in reply to Hidden]

Ah Good point.😊

[Whydothis]

Now you have had your endoscopy you can go gluten free straight away, and that is the best thing to do. How much advice you get about the diet depends on your GP - but Coeliac UK is a very good place to start, although after a couple of years I have decided they are not useful to me any more, and I don't agree with all their advice!Regarding your children - apparently they (and any siblings you have) now have a 10% chance of being coeliac, compared to the 1% ish for other people - so yes - they should be tested.

[debby98]

I was diagnosed about 6 years ago now in my 60s ! My son has certain problems a bit like mine so he asked to be tested but came back negative so I would say worth your daughters being tested if they have any signs .Once diagnosed I was sent to a 2 hour course which to be honest wasn’t that helpful ,one line help was the best and a few books .I now find it easier to cook from scratch ,at least you know what goes into your food and everyone in my family eats the same meals . They can’t tell the difference and love all I cook .Hope you get results soon and then on the road to feeling better .