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Original poster

Eating gluten before blood test for coeliac disease

35 replies

cheapskatemum · 19/03/2023 06:03

Hi, all!

I have avoided eating wheat, dairy products (seem to be ok with lactose free) and soya for 20 years after this being suggested to me by a homeopath. It cleared up my symptoms, the worst of which was mucus completely clogging my nose & Eustachian tubes, plus a really phlegmy cough.

My GP has suggested that testing for coeliac disease might be a good idea as I would know for sure if I was allergic to gluten. I have the test booked for 30th March, so have been trying to eat wheat products in the lead up to it. Trouble is, every time I eat wheat, it just seems to go straight through my digestive system & I'm sat on the toilet with diarrhoea a few hours later.

I'm just wondering if I can carry on with this for the next 10 days! Has anyone else had this problem & what did you do? Happy to hear of your experience or the experience of others close to you about having the blood test.

OP posts:
SilverGlitterBaubles · 19/03/2023 08:05

otherwayup · 19/03/2023 07:54

I regret getting a professional diagnosis.
I was so so poorly by the time I had my blood test and endoscopy.

I come from a family of coeliacs, so no surprise that I am too!

Is there really any need for an official diagnosis?
I know years ago people could get food on prescription with one but those days are long gone I believe?

Being coeliac put you at higher risk for other things so you would benefit from enhanced screening if your GP was aware.

pastabest · 19/03/2023 08:07

Is there really any need for an official diagnosis? I know years ago people could get food on prescription with one but those days are long gone I believe

see my post above - once you have the diagnosis your GP record should be coded in a way that means you also get access to free covid/ flu vaccinations, invited for an annual checkup and bloods and it means that if you do develop any of the other autoimmune conditions or illnesses related to coeliac disease you already have a starting point for diagnosis - e.g for things like dermatitis herpetiformis or Sjogrens Syndrome

Lovelyveg82 · 19/03/2023 08:08

ginsparkles · 19/03/2023 08:02

@Lovelyveg82 no, opposite, she is strictly GF currently.

When we choose to do the blood test she will have Gluten carefully reintroduced.

Apologies

All this would have been avoided if GP did the blood test when your DD was in front of him and consuming gluten!

but to then refer to a specialist is just plain odd

ginsparkles · 19/03/2023 08:12

@Lovelyveg82

Apologies

All this would have been avoided if GP did the blood test when your DD was in front of him and consuming gluten!

but to then refer to a specialist is just plain odd

.... know what I do now I completely agree. But all that time ago, I didn't know all this, I had a poorly unhappy kid, and did what we thought was best.

That said it really makes little difference for her the order. If she'd had the blood test, she'd then have to see a consultant and be GF and LF. Instead she's GF, seen consultant, went LF and will get the blood test. End results the same.

Lovelyveg82 · 19/03/2023 08:34

That said it really makes little difference for her the order. If she'd had the blood test, she'd then have to see a consultant and be GF and LF. Instead she's GF, seen consultant, went LF and will get the blood test. End results the same.

yes but blood test would have meant some clarity right there and then. Thankfully you were able to go private but many wouldn’t have been able to.

I am just so baffled at a GP that refuses blood test but then happy to write a referral to a specialist. 🤷‍♀️ but there we go!

ginsparkles · 19/03/2023 08:37

@Lovelyveg82 I agree. She'd had a blood test but not a coeliac one 🤷🏼‍♀️ ... I was most concerned (probably not the right word!) that a paediatric appointment can take over 12 months!!

ginsparkles · 19/03/2023 08:38

@Lovelyveg82 the gp didn't refuse the bloods, just never mentioned or suggested it, just straight to referral. I didn't know to ask for it as I didn't know we were looking for coeliac at the time.

Lovelyveg82 · 19/03/2023 08:41

ginsparkles · 19/03/2023 08:38

@Lovelyveg82 the gp didn't refuse the bloods, just never mentioned or suggested it, just straight to referral. I didn't know to ask for it as I didn't know we were looking for coeliac at the time.

GP wouldn't do blood test

that’s what confused me

ginsparkles · 19/03/2023 08:42

@Lovelyveg82 soz! Poor wording. GP didn't offer bloods. She'd had a blood test, I didn't know what we were looking for or should be asking for. So they said referral and that's what we did.

Original poster
cheapskatemum · 21/03/2023 07:03

Thank you for all your replies. I didn't realise you had to eat gluten 6 weeks prior to the blood test. I will only have been eating gluten for 2 weeks before I have it. GP certainly didn't give me a careful plan to follow.

Extra thanks to those who have pointed out why it is important to know for sure if you have coeliac disease. I will have a look at the other conditions that can be associated with it.

It does seem that it would have been a good idea to have had the blood test 20 years ago. I didn't even know there was one then. At that time the dairy allergy (which I later discovered was to lactose) seemed the greater. You could have knocked me down with a feather when the homeopath also said to give up wheat. Also soya - soya was not so significant a feature in UK diets then as it is now.

You have given me plenty to think about. Thank you all again for taking the time to reply. @ginsparkles I hope your daughter gets the care she needs at this time.

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