Advice : Need some advice I been told... - Gluten Free Guerr...

Gluten Free Guerrillas
9,624 members3,917 posts

Advice

Starfly13
Starfly13

Need some advice I been told by my doctor today that I have borderline coeliac disease. Does it mean I have it and will I need to be kept an eye on

16 Replies
oldestnewest

Did your doctor not say what they plan to do?

There are a few possibilities, they may wait and run the test again in the future or they may send you for a biopsy to confirm the diagnosis now. The blood test is not a reliable way to diagnose on its own, you tend to always need a biopsy to confirm.

Starfly13
Starfly13
in reply to Cooper27

Does it mean I have it

Cooper27
Cooper27
in reply to Starfly13

You won't know, you need a gut biopsy to tell you whether you have it or not.

Hi,

It definitely sounds like you need to get some clarification from your doctor.

I’ve never heard of ‘borderline coeliac disease’ before! My understanding is that you either have it, or you don’t (btw, I’m a Coeliac).

It could be that you are in the earlier stages of having Coeliac Disease. This could mean that your Gluten antibody levels haven’t yet gone as sky high as is often seen. Shockingly it still takes an average of 13 years to diagnose the condition in the UK according to Coeliac UK. Maybe you have been lucky and they have picked it up on it before this?

As Cooper says, what are they doing about sending you for follow-up tests such as an endoscopy?

Good luck finding out.

They said I will need a blood test in a few months and might need an endoscopy

It might be worth your time to ask for the actual numbers (and importantly the positive/negative range) on which they based this decision - to see for yourself how they made this judgment call.

They want to wait until you are potentially worse before they are willing to make a decision? That sounds a bit questionable to me! Coeliac Disease is an autoimmune disorder, so the potential for it to cause more damage to your body is obviously there.

Even if they put you forward for an Endoscopy today, it is likely to be several months before you get an an appointment to be seen in many parts of the UK, such are the waiting times.

Perhaps Coeliac UK might be able to offer you some support?

My son Was treated for IBS for years, till a doctor decided to send him for tests, the result was Coeliac, further tests revealed kidny damage, Barratts esophagus and Dermatitis Herpetiformis. I was tested after this because I had eczema for years, my result Coeliac and Dermatitis Herpetiformis, early diagnosis is essential.

My result was only a weak positive from the antibody blood test but I know that I have neuro effects when I eat it so I'm strictly gluten free and haven't bothered chasing up a biopsy.

Starfly13
Starfly13
in reply to Leils

Does it mean I have it

Cooper27
Cooper27
in reply to Starfly13

It doesn't mean you have it, but it doesn't mean you don't. You need a gut biopsy to diagnose coeliac disease, blood test is not enough on its own.

Well it shows your body has produced some antibodies against it... mine was weak positive but I was already on a low gluten diet so may have been stronger result if I'd eaten gluten fully for 6 weeks before

Yours may not be severe but we can't tell you that

You need to either have a biopsy ASAP while still eating gluten or keep a diary of symptoms having cut gluten out.

Mine is more neurological than digestive so a biopsy is pointless.

Benjamin123
Benjamin123
in reply to Leils

Even though your symptoms are neurological, your gut will still show villi damage as that is part of the process of how coeliac impacts. You can have villi damage but no gut symptoms. The mechanisms are the same for everyone but the symptoms/manifestation of the disease can be different from person to person.

Have never heard of 'borderline coeliac' and not entirely sure such a thing exists. Coeliac is an autoimmune condition. It's like telling someone they have borderline MS or borderline Motor Neuron. I think you need to go to a different GP as that one doesn't seem to be very clued up, or professional.

I've heard of it. Someone I know was told they had a borderline result - it means the blood test came back with a number of around 6-7 (negative being <7, positive being >7). This acquaintance had a family history too.

The doctor will usually re-run the test in a few months or if you feel symptoms are worsening, before referring for a biopsy to confirm.

It's not borderline coeliac, it's a borderline blood test result.

That makes sense. Thank you for updating on that.

When I was diagnosed I was told my blood test was "a borderline weak positive". There is a margin of error of something like 2% as I recall but borderline doesn't mean just wait and see as that's more time when your gut is being further damaged and you're being starved of nutrients, if you are coeliac.

I would expect your GP to get you tested again with a view to having a biopsy unless a second test is clearly negative or go straight to a biopsy.

Good luck!

You may also like...