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Allergies and intolerances

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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:
Lovelyveg82 · 19/03/2023 06:10

Were you not given a very careful plan to follow re what you ate in build up to test?

did the Gp just say…. Eat gluten freely before the test?

Lovelyveg82 · 19/03/2023 06:11

if all ok, why does the Gp want to test?

GeneralMelch · 19/03/2023 06:31

Sorry, no advice but know my FIL had to do this a few years ago, he didn't want to do it and was ill for the whole time. Result was "yes, you are allergic to gluten" and was given an allowance for gluten-free bread and told to self-manage the condition. i.e. Don't eat gluten.

samour · 19/03/2023 06:34

I have 2 children diagnosed with coeliac through testing. As a result we have no gluten at home, meaning DH and I significantly reduced the amount of gluten we have. It soon became clear that DH was reacting when he ate gluten so he cut it out. He would now not be able to eat gluten for the required 6 weeks prior to testing - it would make him too I'll.
why does the doctor want to test you? If it is for coeliac then the treatment is to return to a GF diet.

QuintanaRoo · 19/03/2023 06:39

Coeliac U.K. say you need to eat two good portions of gluten a day for six weeks prior to the test. Not sure how long you’ve been trying?

dd had a strongly positive blood test but was told to carry on eating gluten until the endoscopy which had a minimum of a six month waiting list. She was unbelievably ill. We had just made the decision to stop eating gluten and not bother with an official diagnosis when she collapsed due to malnourishment and ended up in hospital for a week, she got her endoscopy then!

just beware the blood test is not the last stage. Can you carry on eating gluten for months?

QuintanaRoo · 19/03/2023 06:43

It just annoys me so much that the testing takes so long. Ask yourself do you need the official diagnosis? Some GP do stuff like annual bone scans if you have coeliac. But Dd has no benefit from her official diagnosis apart from knowing that’s what was causing some of her previous issues. But if you know it makes you poorly you could just consider yourself coeliac and stop eating it. Would you be disciplined enough to stop eating it without a diagnosis? I suspect if it makes you poorly then probably.

Tiredandweary1987 · 19/03/2023 06:46

Sorry, got to put a few bits of info here.

firstly, coeliac isn’t an allergy, it’s an autoimmune condition. If you are coeliac your body would have an autoimmune response to gluten causing long term damage (which is why it’s not simply an intolerance)

I understand your GP saying this, and they are right to- the only way the TTG IGA blood test can pick up what it needs to is by you consuming gluten.

in your position I never would have stopped eating gluten by advice of anyone other than GP, for exactly the reason you’re experiencing now.

you won’t notice your body’s extreme response to consuming gluten until after you cut it out, which is why it angers me that people other than GP’s are asking people to do so! At the point they pick it up, they should tell people to go to the GP, continue to eat gluten and rule out coeliac, as it is a serious disease.

But, in your position, you will need to keep consuming small amounts, yes.
gluten is barley, rye, oats and wheat.

also very few areas get anything on prescription now, so if you’re getting a diagnosis purely for that, I seriously wouldn’t. I get nothing on prescription.
hope this helps, sorry- I can’t help with symptoms as mine are mainly pain, fatigue and very unwell, and that’s just from cross contamination.

ginsparkles · 19/03/2023 06:52

We are about to do similar for DD under the guidance of our consultant.

His focus was getting her well first and foremost as she was missing school and very miserable generally, so we eliminated gluten first and laterally lactose. The difference was immediate.

He says at some point we need to test just for medical necessity. So we will be doing 2 weeks of 2 slices of normal bread of equivalent and then a blood test for 2 specific antibodies. He is happy to diagnose on the basis of the two antibiotics and not put her through the endoscopy.

But he has said if she can't tolerate the gluten at all, then we will just carry on as we are, as ultimately the treatment course is the same if she's coeliac or intolerant.

DH had the blood test and it was negative, he's down for the endoscopy but it's following a gluten free diet for now as his reaction to gluten is too severe for him to be regularly consuming it.

QuintanaRoo · 19/03/2023 07:10

@ginsparkles no point having the endoscopy if he’s still gluten free by the time he gets his appointment? Has he thought about a gene test to see if he has the gene? The standard 23andme health test tests for the gene.

ittakes2 · 19/03/2023 07:10

I have ceoliacs disease and I actively avoid gluten and have for 30 odd years. I have been having ceoliac blood tests recently saying I am testing positive for eating gluten - I can only assume from possible cross contamination when I eat out.
personally if it’s making you ill I would stop - I think you have eaten enough to test positive if it’s affecting you. I paid £230 for my daughter to have a ceoliac gene test - if you don’t have the gene the chance of having ceoliacs os very rare

SeatonCarew · 19/03/2023 07:19

ittakes2 · 19/03/2023 07:10

I have ceoliacs disease and I actively avoid gluten and have for 30 odd years. I have been having ceoliac blood tests recently saying I am testing positive for eating gluten - I can only assume from possible cross contamination when I eat out.
personally if it’s making you ill I would stop - I think you have eaten enough to test positive if it’s affecting you. I paid £230 for my daughter to have a ceoliac gene test - if you don’t have the gene the chance of having ceoliacs os very rare

It's coeliac disease. I've been diagnosed for over 40 years.

Waves. 😊

ginsparkles · 19/03/2023 07:30

@QuintanaRoo .... at the moment we are deciding the best course of action for him to be honest. If he does book the endoscopy he'll reintroduced small amounts slowly.

But we'll probably do DD first, if she's comes back positive we'll explore avenues for DH. If she comes back negative we'll work on the basis of intolerance for both.

Lovelyveg82 · 19/03/2023 07:36

ginsparkles · 19/03/2023 06:52

We are about to do similar for DD under the guidance of our consultant.

His focus was getting her well first and foremost as she was missing school and very miserable generally, so we eliminated gluten first and laterally lactose. The difference was immediate.

He says at some point we need to test just for medical necessity. So we will be doing 2 weeks of 2 slices of normal bread of equivalent and then a blood test for 2 specific antibodies. He is happy to diagnose on the basis of the two antibiotics and not put her through the endoscopy.

But he has said if she can't tolerate the gluten at all, then we will just carry on as we are, as ultimately the treatment course is the same if she's coeliac or intolerant.

DH had the blood test and it was negative, he's down for the endoscopy but it's following a gluten free diet for now as his reaction to gluten is too severe for him to be regularly consuming it.

I can’t understand why the first action was to blood test given your DD was consuming gluten. Instead the consultant said to go straight to elimination 😐

Lovelyveg82 · 19/03/2023 07:38

why the first action was not to blood test

ginsparkles · 19/03/2023 07:40

@Lovelyveg82 in fairness to the consultant, because the wait for a paediatric appointment is currently 12 months, I was not prepared to leave my child in pain for that long, so I made the initial elimination decision. Which then the consultant has been happy for continue, and for us to do blood tests at a time which fits in with our life, not putting our life on hold for the test.

pastabest · 19/03/2023 07:43

my relatives with coeliac were all put in the vulnerable group during covid and were offered their covid vaccines earlier than their age groups. They also are eligible for free flu jabs annually.

They are invited for annual bloods and GP check up, coeliac disease comes with increased risks of a number of cancers, bowel issues, deficiency issues and increased bone concerns. Many people with coeliac can also struggle with other things like dairy etc which again increases their risks of deficiency issues.

The diagnosis for coeliac doesn't do much in terms of actually impacting on the coeliac disease, but it does open gateways more easily when required when issues linked to the coeliac are identified - e.g for bone scans, dietician appointments, prescriptions for high doses of calcium, monitoring for other health issues and listing for vaccines due to having an autoimmune condition.

Lovelyveg82 · 19/03/2023 07:48

ginsparkles · 19/03/2023 07:40

@Lovelyveg82 in fairness to the consultant, because the wait for a paediatric appointment is currently 12 months, I was not prepared to leave my child in pain for that long, so I made the initial elimination decision. Which then the consultant has been happy for continue, and for us to do blood tests at a time which fits in with our life, not putting our life on hold for the test.

It is a blood test. I can’t understand why straight to elimination of you were under consultant care?

Lovelyveg82 · 19/03/2023 07:49

You were already under consultant care when you went to consultant to discuss how Ill your DD was. But rather than blood test, perfect opp as she was consuming gluten, straight to elimination. Doesn’t make sense!

SilverGlitterBaubles · 19/03/2023 07:53

It is important to recognise the difference between wheat intolerance and coeliac disease which is a more serious autoimmune condition. As coeliac is associated with deficiencies and puts you at high risk of other illnesses it is important that this is diagnosed properly so it is on your medical records. Self diagnosis is completely pointless.

ginsparkles · 19/03/2023 07:53

@Lovelyveg82 .... sorry I was vague in first post. GP wouldn't do blood test, wait for NHS consultant was 12 months, private (which we did and paid for ) was over 6 months.

I was not leaving my child feeling uncomfortable and missing school, so I researched and I eliminated before seeing the consultant.

On first appointment with consultant all was discussed and he was happy to continue with elimination as treatment for intolerance and coeliac would be the same and he saw no point in making her unwell at that stage.

He eliminated lactose from her diet as well.

At latest appointment he requested elimination for a further 12 months with a re introduction and blood test at a time we could manage ourselves so we can control DD's symptoms without missing vital school times.

If the wait was shorter or GP organised a blood test, then she would have had the blood test straight away.

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?

Lovelyveg82 · 19/03/2023 07:57

On what grounds did the GP not do the very easy quick and cheap blood test?

but at the same time was happy to make a referral

Lovelyveg82 · 19/03/2023 08:01

@ginsparkles i know you said that you are careful to include some gluten in your DD’s diet. Is that not sufficient for the test?

ginsparkles · 19/03/2023 08:01

@Lovelyveg82 .... I have literally no idea! Don't really want to give you all her medical details. But that's what happened and this is where we are!

Ultimately as the treatment is the same regardless and DD is now healthy and happy on a GF and LF diet, that's all that matters to me. Her consultant is happy with our joint course of treatment and care plan.

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.