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Possible false positive blood test for Celiac?

Carpman123 profile image
8 Replies

My wife has been suffering from boating and tummy pains / nausea for a year. The Celiac blood test has come back positive ans she is waiting to have a biopsy done to confirm. She recently also had a short period of raised white blood cells (eosinophils). Can anything cause a false positive blood test foe Celiac? She seems to get the pain / bloating / nausea even on days with not eating gluten.

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Carpman123
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Cooper27 profile image
Cooper27

Do you know what level her coeliac blood test came back with? It's possible to get false positives, which is why they confirm with the biopsy, but the higher the "positive" number, the less likely it is to have been a false positive.

Carpman123 profile image
Carpman123 in reply to Cooper27

No - the letter just said the result is positive "raising the possibility if celiac disease"

Cooper27 profile image
Cooper27 in reply to Carpman123

It's worth calling to ask what the number was. If over 70, it's pretty much a certainty she has coeliac disease. If over 100, then the biopsy is a waste of time, and she can be confirmed coeliac without going through that.

Regalbirdy profile image
Regalbirdy

Hi,

Sorry to hear about your wife’s difficulties.

As you are already aware, she is highly likely to have Celiac Disease (spelt Coeliac Disease in the UK).

The standard tTg. Coeliac blood test looks for high levels of antibodies to gluten - and only if those antibodies exist in the body, is a positive result given (they shouldn’t be there!).

As for the eosinophils, my understanding is that they can be raised if the body is reacting to inflammation caused by an allergy.

Coeliac Disease is an autoimmune disorder whereby the bodies immune system gets confused and attacks the lining of the guts. This will be the most likely source of any inflammation.

Once the biopsy is over (and not before as it can lead to a false result), your wife is free to go gluten free any time she likes. Fortunately Coeliac disease requires no long-term medications, although for some people a normal inexpensive daily multivitamin is recommended. The gluten free diet gets much more manageable with time. I found the first 6 months to be the most difficult.

Learning to manage Coeliac Disease is not like recovering from the flu. It can take many months - ie. it is often a gradual process.

This is partly because your wife may find out in due course that she has a number of vitamin and mineral deficiencies to overcome on her journey back to good health. The most common are Iron/folates; B12, and Vitamin D. Others to watch for are things like magnesium and calcium, which will affect bone health. Unfortunately Coeliac Disease can cause osteoporosis! If you are concerned about this possibility, then a Dexa scan is usually recommended.

Good luck to your wife, I hope she starts feeling better soon.

R.B.

Carpman123 profile image
Carpman123 in reply to Regalbirdy

Many thanks for the comprehensive reply! So it is possible that the raise white blood count was a reaction to inflammation caused by Celiac Disease?

Regalbirdy profile image
Regalbirdy in reply to Carpman123

I’m no doctor, however it would seem logical to me.

The amount of damage/inflammation caused in the gut will depend on how advanced the Coeliac Disease is. It’s sometimes measured/categorised by using the Marsh scale.

Here in the UK, the average time to diagnosis is 13 years! (according to coeliac UK). For me personally, I think it was probably 33 years (so my guts took a beating). 😐

Carpman123 profile image
Carpman123 in reply to Regalbirdy

Well she has only has issues for 11 months so we may be lucky and get a very quick diagnosis!

Regalbirdy profile image
Regalbirdy in reply to Carpman123

Btw, the 13 years to a diagnosis is not a criticism of the UK health system...! Very often people can be asymptomatic for literally years (like I was) and have Coeliac Disease without being aware that they have it. It doesn’t always have to present as gut issues.

Unfortunately it can also be mistaken for IBS, because many of the symptoms are the same. Although as awareness and understanding of Coeliac Disease increases, this is thankfully becoming less common.

Also if the diagnosis does get confirmed, then consider suggesting to all first degree relatives of your wife’s that they also have the blood test done. This is because the chances of having Coeliac Disease go from 1:100, up to 1:10 (statistically speaking), if you’re a 1st degree relative of a Coeliac - as it is known to have a genetic component. x

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