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Please help - coeliac

(23 Posts)
HugAndRoll Mon 03-Feb-14 13:16:18

I've just had a call from my dr, blood tests show positive for coeliac. There's no emergency appointments today so have to wait until tomorrow.

Being referred for a biopsy but I'm worries and confused.

Juno77 Mon 03-Feb-14 13:22:19

First off - don't be worried. Coeliac is annoying but perfectly manageable.

It's very daunting at first but you really get used to it very quickly.

The doctor won't tell you anything anyway - so don't worry about having to wait for an appointment.

The biopsy will confirm whether or not you have coeliac.

Are you continuing to eat gluten? It is important that you do, otherwise you will likely get a false negative biopsy result.

2madboys Mon 03-Feb-14 13:25:11

Do try not to worry. Dh is coeliac and (presumably you've been having symptoms?) the symptoms disappeared very quickly after he stopped eating gluten and he felt loads better. He was diagnosed around 5 years ago and gluten free eating has improved lots even since then. It's not quite as onerous as it might appear at the moment. GP's however don't always know a huge amount about it so make sure you do your own research as well!

CMOTDibbler Mon 03-Feb-14 13:37:07

I know it sounds like a complete life change, but you do get used to it fairly quickly, and things are sooo much better these days in terms out eating out.

For now, you don't need to do anything as until after the biopsy you shouldn't change your diet at all. So take the time to start checking the labels on everything you buy and work out what you need to change that isn't obviously gluten, and buy gf ones instead. So Kallo stock cubes, Bisto best gravy, tamari instead of soy sauce, heinz beans and so on. These are the sort of thing that can catch you out.

And have a really good clean out of the cutlery drawer as thats the sort of place crumbs accumulate!

Research gf menus at places you like to eat so you'll be prepared to suggest places to eat where you'll be safe, and look at MN threads on eating gf

RubySparks Mon 03-Feb-14 13:39:21

I would also suggest joining coeliac uk - https://www.coeliac.org.uk/home/

HugAndRoll Mon 03-Feb-14 14:59:12

Thank you all. The dr said I need to still eat gluten until the biopsy, taking this as an opportunity to still eat cake.

I'm worried about the biopsy and also don't know what the likelihood is after having a positive blood test you have a negative biopsy and are fine.

Juno77 Mon 03-Feb-14 15:00:34

Well, the blood tests can be wrong.

What have your symptoms been like? Do you think you have coeliac?

HugAndRoll Mon 03-Feb-14 15:04:25

Hair loss, extreme fatigue, vary from constipation to the runs. It's the tiredness more than anything. Can't lose weight either so thought that's not coeliac but apparently some lose loads and some gain weight.

I thought thyroid but that's normal. I had masses of blood tests and this was the one which was positive. That and my iron count is low (which is apparently also a symptom).

Juno77 Mon 03-Feb-14 15:09:00

Well, if this is the only test that cam back positive then it might well be right.

The weight thing is the only thing concerning me.. it's hard to gain weight when your body isn't absorbing the nutrients, though you can. Some people do, though most lose weight.

Tiredness wasn't something that particularly affected me, but I am very active and did find I got very tired on sedentary days.

The mixed constipation/runs sounds about right!

I would just carry on as you are and wait for the biopsy. It's fairly conclusive - as long as you are continuing to eat gluten, they can tell by the tiny bit of your intestine that they take (it is really tiny) whether the villi are exposed or not.

bronya Mon 03-Feb-14 15:22:41

Just wanted to say that if the biopsy confirms that you are coeliac, it's not that bad. I don't remember what gluten containing food tastes like, but I remember the tiredness so clearly - and always being ill! No food is worth that! If it's positive, post on the allergies board here, and you'll get tonnes of good advice.

CMOTDibbler Mon 03-Feb-14 17:07:16

The weight thing varies hugely - the concept of coeliacs as very thin is outdated as your body will cling onto every calorie it can, hence making you so tired as then you expend less. I was a totally normal weight when diagnosed.

The good news on the cake front is that gf cakes can be fabulous

JunoMacGuff Mon 03-Feb-14 17:14:55

cmot I think I was probably just so underweight as I was incredibly active, ate loads and just would not gain weight. So I stand corrected that weight loss is a symptom - maybe it's just to do with lifestyle as well.

Oh but I absolutely agree about GF cakes. M&S do a lovely chocolate cake and almond cakes are amazing

HugAndRoll Mon 03-Feb-14 17:24:48

Thanks all smile. I'm a good baker so will be able to make my own cakes etc, just not going to be the same.

I still may not have it. Do you know of anyone who had a positive blood test and a negative biopsy?

HugAndRoll Mon 03-Feb-14 17:25:46

(And I'm not huge, just big for me. Size 14 and 5 foot 8 ish).

JunoMacGuff Mon 03-Feb-14 17:27:39

Yep, a lot of people get negative biopsies, though I often think they might have been cutting out gluten in the run up to the biopsy.

They're only done on people who have tested + on the blood test, but about 30/40% come out negative.

Blood tests aren't a great standard for testing. Hence the biopsy.

PoshPenny Mon 03-Feb-14 19:03:47

Don't be worried, hopefully the diagnosis for all your issues is within sight. Even if the biopsy turns out to be negative, once your past that stage you could still opt to try GF and see if it helps, which I bet it will.

HugAndRoll Mon 03-Feb-14 19:48:15

Ok that's answered my main question. Just hope the wait isn't too long.

HugAndRoll Thu 06-Feb-14 07:35:28

I've been told the wait is up to six months sad.

JunoMacGuff Thu 06-Feb-14 09:32:51

They said that to me but I had an appointment in under 2 months. But you have to be on a gluten containing diet for at least 6 weeks anyway before you can get the biopsy.

HugAndRoll Thu 06-Feb-14 10:04:30

Thanks for replying juno. I'm still eating gluten at the moment so the sooner the better. If this is the cause of me feeling so crap I don't want another 6 months to pass before I can start feeling better.

JunoMacGuff Thu 06-Feb-14 10:08:34

Sadly it is a long process - such is the nature of the NHS when it comes to non-life threatening illnesses.

I agree it's annoying but you will look back and not even remember this period of time, once you are diagnosed and living GF.

It took me over 2 years to go from initially feeling ill, to being diagnosed.

HugAndRoll Thu 06-Feb-14 10:22:05

Wow! It's been about 6 months so far for me so that's put in into perspective.

jellybeans Thu 06-Feb-14 10:30:57

Don't worry, it isn't so bad. I think TTG blood testing is up to 90% accurate especially if your numbers are high. Coeliac UK is great.

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