Coeliac Testing

[Lucyr]

I’ve been asked to go for a coeliac test, in addition to my usual 3 monthly tests - my usual tests check iron as mine is low and do a blood smear and blood count to monitor the types of white blood cells as my white blood cell count is always high.

I haven’t reported any symptoms or requested the coeliac test so I’m guessing either one of my outstanding referrals (awaiting an assessment for ME) requested it, or it’s been added on because of the low iron. Did have a coeliac test before but I’d guess 7-10 years ago. I’ve booked the appointment but next available one is several weeks away.

Has anyone been found positive for coeliac with only general symptoms of exhaustion and low iron? I do regularly eat bread but don’t think i specifically get an upset stomach after it, though I have always had a bit of an IBS type issue. Toast or a biscuit would usually be my go to foods to settle stomach though, so thinking that means it will probably be negative?

 

[Leadinglights]

I’ve been asked to go for a coeliac test, in addition to my usual 3 monthly tests - my usual tests check iron as mine is low and do a blood smear and blood count to monitor the types of white blood cells as my white blood cell count is always high.

I haven’t reported any symptoms or requested the coeliac test so I’m guessing either one of my outstanding referrals (awaiting an assessment for ME) requested it, or it’s been added on because of the low iron. Did have a coeliac test before but I’d guess 7-10 years ago. I’ve booked the appointment but next available one is several weeks away.

Has anyone been found positive for coeliac with only general symptoms of exhaustion and low iron? I do regularly eat bread but don’t think i specifically get an upset stomach after it, though I have always had a bit of an IBS type issue. Toast or a biscuit would usually be my go to foods to settle stomach though, so thinking that means it will probably be negative?

I think the symptoms can be a whole variety of things from stomach issues to being put down to mental health.
I know someone who thankfully not diabetic has allergies to gluten, nuts, eggs, dairy so has a very restricted range of foods he can tolerate.
The trouble is that gluten is in more foods than people realise, it is even in certain brands of coffee. Foods which you would think would be OK because they are similar, like cucumber, courgette, melon, for some people one will be fine but not the others.

 

[Inka]

Exhaustion and low iron were the symptoms for a friend’s daughter. She didn’t really have any abdominal symptoms. She just felt very tired and weak, and generally not herself.

Not everyone gets abdominal symptoms so it’s good they’re doing the test. I have regular coeliac screens because of the Type 1. My consultant said there’s something known as ‘silent coeliac’ where there are no obvious abdominal symptoms.

 

[Lucyr]

Exhaustion and low iron were the symptoms for a friend’s daughter. She didn’t really have any abdominal symptoms. She just felt very tired and weak, and generally not herself.

Not everyone gets abdominal symptoms so it’s good they’re doing the test. I have regular coeliac screens because of the Type 1. My consultant said there’s something known as ‘silent coeliac’ where there are no obvious abdominal symptoms.

Interesting that not everyone has abdominal symptoms. I’ve felt not myself for over a year now so it is good they’re testing for it now, the more things ruled in or out the more chance I’ll have of finding out what’s going on I hope.

 

[AndBreathe]

Interesting that not everyone has abdominal symptoms. I’ve felt not myself for over a year now so it is good they’re testing for it now, the more things ruled in or out the more chance I’ll have of finding out what’s going on I hope.

I tested inconclusively for coeliac, but then I hadn't carbed up for the test - with the knowledge and agreement of the Endo ordering the test(s). His view was it would have been like hitting my toe with a hammer then asking if I had any pain in my toe. Not the best of analogies perhaps, but generally mean it wouldn't reflect my day to day lifestyle.

His strong recommendation was to go GF anyway, as that test result means that was my scorer on the day and antibodies can be vary variable in most folks.

To be honest, I was skeptical as I hadn't knowingly had any symptoms, until I really didn't have any symptoms.

I now have very definite reactions to gluten, but the tummy part isn't until until a day or so later, lasting several days, so it is easy to see how something could become "just how it is in my life".

As has already been alluded to, gluten is a sneaky devil and in lots of things you'd never guess, including cola drinks, Worcestershire Sauce, Soy Sauce and so on.

Should you test positive, or decide to try living a GF lifestyle, it can take a couple of months to show any benefits, as that can be how long it takes to eliminate all traces of gluten irritation is some folks.

Good luck with your test.

 

[Lucyr]

Thankyou @AndBreathe , I do eat bread each day as I usually have a sandwich for lunch and will often have something gluten in my tea. It’s a few weeks till the test so I’ll make sure I keep doing that.

 

[Pumper_Sue]

As already stated everyone's symptoms are different as are we 🙂 I had belly ache as one of many symptoms.
Sometimes the test gives a false negative so unless you are offered an endoscopy to make 100% sure, then go gluten free after the test and see if that makes any difference.
I know that now I'm gluten free I have bags of energy compared to what I had before.

 

[Lucyr]

Sometimes the test gives a false negative so unless you are offered an endoscopy to make 100% sure, then go gluten free after the test and see if that makes any difference.

Yes I think I will, been feeling rubbish for so long that anything’s worth a go, thanks

 

[AndBreathe]

Yes I think I will, been feeling rubbish for so long that anything’s worth a go, thanks

Good to hear, Lucy. If you do end up trialling GF, please do give it enough time to really take effect, if there’s going to be an impact