Gene Test

Had mentioned previously I was having coeliac gene test. Turns out I do have the HLA DQ 2 gene. So means I have the coeliac gene, but still no clarity on if I do have coeliac (negative blood tests, no endoscopy). No further forward, but was an interesting test to have.

[nellie237]

Hi Mise,

Well, you've definitely got something going on. Can you use this test to get an Iga deficiency test on the NHS? or have you already had it?

One of the admins (SlowDragon) on the thyroid site tested negative but managed to get a biopsy - she has posted that the Gastro was surprised that the biopsy showed damage as if she was coeliac.

I'm quite staggered that you haven't had an endoscope/biopsy.

[Hidden in reply to nellie237]

I had taken gluten out of my diet for quite a while before I could get a GP/gastro to take me seriously for a biopsy. I didn't have the sedation and panicked too much so they stopped the process. Can never face the idea of going back for one. In general I find gastros quite poor - the do a few random tests, fob you off and then fall out of the system again. To be honest, I genuinely hate this people at this stage and would rather be ill/in pain than face the humiliation and gaslighting of the NHS system. I keep repeating the need for a Iga deficiency test, but it's like talking to the wall - never been referred for one. When I say I greatly dislike these people, I mean it. This has been almost 20 years now of this crap and being left to flounder or told to take painkillers.I will look after my own health and they can all carry on driving around in their fancy sportscars paid for by the taxes of the public they are entirely failing.

[nellie237 in reply to Hidden]

I completely understand. I've had 2 endoscopes. The 1st without sedation - gagging/retching the horrid feeling when they put air in still leaves me cold- bloody awful experience and that was for reflux..so, I don't think it involved biopsy.

The 2nd time with sedation was last month - no gagging/retching - I was so relaxed I was trying to watch on the screen, but the nurse noticed and stepped in front of me.

There is a whole world of difference between the two.

In the USA they only ask you to eat gluten for 2 weeks for biopsy (6 wks for blood), which I think is interesting.

Take time to think about it. Regular monitoring (blood tests) could be very important/beneficial in your future - painkillers are the opposite.

[Hidden in reply to nellie237]

No, not for me. Monitoring makes no difference as it all comes down to same thing - avoiding gluten, and trying to avoid gluten in a country that allows gluten in gluten free food. Doctors are a waste of time where coeliac is concerned.

[philaustin in reply to nellie237]

I'm with you wholeheartedly on the sedation thing. It was almost an enjoyable experience. I was shown my gut wall on the screen in glorious color and when I commented how nice and smooth it looked was quickly informed that it should actually be covered in villi!

[Hidden in reply to philaustin]

Oh dear! Good that it wasn't traumatic, but not such a good result. Hope you're feeling better these days.

[philaustin in reply to philaustin]

I would be, except our surgery has just sent me a letter to tell my that because I'm 'immunosuppressed' (whatever that might mean) the two Covid jabs I've had could be no use and everyone in my house needs to be vaccinated to protect me! Big disappointment.

[Hidden in reply to philaustin]

Wow - that's a bit bonkers. So, to get this right - you have been told coeliac means your immune system is suppressed, and the two vacinations won't work? Why so? Surely the reason to get vaccine is because it's meant to be effecive.

[philaustin in reply to Hidden]

It does sound bonkers doesn't it? The vaccination is also supposed to prevent you transmitting Covid-19. If coeliacs aren't protected then those around them need to be vaccinated to prevent them infecting the coeliac. Its a bit like carers in retirement homes I suppose. At least it will be easy to recognize other coeliacs. We'll be the ones wearing masks for the rest of our lives.

[Lydiahipkin]

Hi there. I'm in the same situation as you, been ill on and off for a long time and get so sick from even a crumb of gluten can't face eating it for any length of time to have blood test. I've been trying to push my doctor for the gene test so at least I would know I have the gene then that would be the difference between knowing if its a chance I have celiac disease or that I'm just gluten sensitive. My doctors says it's not available on the NHS. So just wondering if you managed to get the test on the NHS and was it through your doctor or your gastroenteritis? Good luck with everything, I hope you manage to her some answers soon.

[Hidden in reply to Lydiahipkin]

Hi, sorry to hear you've been up against it as well. I got referral for the gene test from the NHS gastro. I've done so much complaining about the lax attitude I've faced over past few years, that it was something for him to shunt me off on to get rid of me/shut me up! I would ask your GP for gastro referral for the gene test, or ask you GP to refer you directly if they can. Not right that you are left in limbo. I'm starting to think the whole idea of 'gluten intolerance' was invented to cover the asses of doctors who can't or won't diagnose coeliac properly.

[Lydiahipkin in reply to Hidden]

Thanks so much for your reply. Already asked my GP but said he can't do it. I am under gastroenterology at the hospital at the moment but are ready to sign me off as I refuse to eat gluten for the test. I have a job, a son and an elderly mum to look after so can't think of purposely making myself ill at this moment in time. I will try push gastroenterology to do it but actually getting hold of anyone at the moment is a job in itself. Good luck with everything and hope you get some answers soon.

[Hidden in reply to Lydiahipkin]

You too.

[Researchfan]

Hi Mise.Sorry to hear your still no further forward.

The gene test interesting.

I understand your situation. I think the problem is too that your average GP doesn’t keep up to date with research and just dishes out pills. They’re not specialists. And then if you eventually get to a specialist too it’s lucky if you get one that’s open minded and keeps up to date with the latest scientific knowledge.

It’s true we have to be our own doctor or advocate and push for what we think is in our own best health interests and just hope the doctors listen and help. Your lucky if you get an NHS doctor that will listen and genuinely want to help get you well.

Personally I’m due to have the coeliac disease blood test. I’ve managed to eat and reintroduce limited but hopefully enough gluten foods. I decided after still ongoing issues and having been gluten free for years that I wanted to know whether I’m coeliac or not for certain, whether I need to be strict gluten free, or whether it’s non coeliac gluten sensitivity or even wheat barley rye hypersensitivity (allergy). I’m sensitive to cows milk and am allergic to egg yolk (asthma).

I’ve tried different diet approaches all the well being gluten free and the most helpful for my dysmenorrhea is the low histamine diet as well as taking antihistamines (why I suspect histamine intolerance or actual hypersensitivity to certain foods).

It’s like a puzzle to solve. I’m definitely sensitive to gluten containing foods. Before my ibs was constipation then about two weeks ago it just suddenly changed and gone the opposite. Maybe it takes weeks before the wheat has an affect depending on how long been avoiding it.

Interestingly I had a blood test about two weeks in to gluten challenge and I was borderline for B12 and folate, and high TSH normal T4. I started a B complex liquid supplement and this has helped my focus and energy.

As Nellie237 informed me the doctor should be following up the thyroid test. My GP just said it’s fine. But given some symptoms of under active thyroid and the TSH I will follow up once I’ve been tested for coeliac disease.

Sorry for long reply!

I hope you keep going to get answers and get well. Could you possibly get another GP opinion? Explain the stress it’s causing and how it’s interfering in your daily life?

I know easier said than done.

Have you ever done one of the at home coeliac disease finger prick tests? Or intolerance allergy testing? I don’t know how accurate they are but could give an indication? But only if gluten in diet for long enough for antibodies to build up.

I did one a few weeks ago out if interest as I couldn’t stand the 6 month belly bloating! and it was negative. but doesn’t take into account a igA deficiency.

I had igG antibodies to gliadin (gluten) and milk. Never done the gene test for coeliac.

X

[Hidden in reply to Researchfan]

Thanks for that. You're brave to do the gluten challenge as it's not easy to have to deliberately make yourself ill for the sake of a medical test. Just be aware though that many hang a question mark over the efficacy of that coeliac blood test. I genuinely do not believe it to be a gold standard test, and if you have the Iga deficiency, it's not going to work either. The whole testing for coeliac just seems a farce.