NHS Failing to provide coeliac diagnosis, thus not monitoring associated health risks-how did you fight this battle?

Hi All

I essentially self diagnosed with coeliac, had it confirmed by a private specialist, ie all symptoms abated on g-free diet (after 7 years of hell). NHS previously misdiagnosed IBS and also mismanaged my thyroid disease (that's another story!).

Now i find that under NICE guidelines, the NHS should have tested me for coeliac on the basis of 'IBS'; then later when i suggested a tga test - which came up negative - they should have offered an IGA deficiency test, which they didn't.

Now i've been off gluten several months and cannot go back on just to tick their boxes, so the IGA deficiency test is pointless at this stage - i was off sick most of this year due to coeliac, mismnanaged Hashimoto's and Pernicious Anaemia, so i cannot go back on gluten and be off work again.

Now the NHS thinks the problem is solved by me simply not eating gluten. They won't give referral to gastro to check out how bad the damage is and they won't monitor the associated health risks. As it is a have some sort of nasty peri-anal polyp which has been there for at least 5 years (they said it was 'nothing') and i do have a colo-rectal referral. (But my records don't state that i have coeliac!) They are just not making the link between coeliac and colorectal cancer, etc + i have been denied a medical diagnosis through incompetence, thus i have to pay for expensive g-free foods myself (i already source and fund my own thyroid meds and b12 injections!).

I'm pretty tired of fighting these b8stards. Already fighting a big battle re getting them to fund NDT since t4 didnt agree with me. Have also changed gps 4 x in less than a year. I re-read the NICE guidelines and it does say that if i dont wish to go back on gluten, i should be offered a biopsy.

Has anyone else successfully quoted this info and finally got a definitive diagnosis? ie anyone in my position who refused to go back on gluten?

5 Replies

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  • I campaign for increased access to insulin pump therapy and the Scottish Government has committed to comply with NICE (although Scotland has its own set of less satisfactory guidelines).

    We advise patients to fight for pumps and to take along the NICE Guidance (in the case of medical technology in England it is a statutory requirement for PCT's to provide medical technology if NICE Technology Appraisal criterion are met. This does not however apply to other treatments. Coeliac is a weird one because the guidelines say almost nothing about treatment. The reason Guidelines such as NICE are in place is to prevent PCT's and individual hospitals, doctors making up there own. They are well-researched and provide guidance based on medical research outcomes.

    I would read the NICE Guidelines and go along to your doctor with a list of the requirements which have not been met in your case. It might also be a good idea to print them out and highlight them and give them to the doctor. To me it appears that there isn't a case to answer for not giving you the diagnosis, follow-up etc that you need.

    If you have already had a diagnosis privately - what is the point in a re-diagnosis by the NHS just to tick their boxes? Is there any way you could get your private consultant to write to your GP. Normally what private docs do isn't tell the GP what the treatment should be but rather "suggest".

    I would be kicking up stink if I were you.

    It has taken the NHS over 40 years to diagnose me with coeliac. I had every other test under the sun but the right one. I was supposed to be screened every 3 years but missed out for some reason (odd because the diabetes consultant I was seeing for 3 years had coeliac himself). It was my eventual routine screening test that picked it up.

    I think ignorance is still a problem, with many medics thinking CD is still very rare.

  • You should do the IgA deficiency test - my understanding is that the causes of IgA deficiency are NOT gluten related.

  • Thanks both. Genova Diagnostics confirmed that i must eat gluten for the IGA test to be definitive.

    Yes of course the private consultant (who is also nhs!) wrote to my gp with the diagnosis of coeliac and a couple of other diseases they had missed! Still they refused to take anything on board, hence my complaint to the Ombudsman. So i moved gps and this one is thick also. I will go back with the NICE guidelines but i'm already fighting to get them to fund my thyroid meds. It's so exhausting. If i was as incompetent as they are, i would lose my job! But they are totally unaccountable, which is why they get away with it.

    No one is accountable, the PCT doesnt investigate complaints, neither ICAS (they will only provide a letter writing service!, only the Ombudsman MAY investigate - they only look at 300 out of the 15 000 they receive. These NHS GPs know they are untouchable

    40 years, that must be some kind of record. Mine was 7 years and i though that was bad!

  • There are lots of different IgA tests relating to coeliac disease:

    labtestsonline.org/understa...

    There is tTG, EMA and AGA IgA, and you DO need to be eating gluten for those.

    The IgA deficiency test, also called total immunoglobulins, is to check that you are actually able to produce IgA type antibodies, and don't have some kind of immunodeficiency. It does not make sense to me that you need to be eating gluten for that test because the conditions causing low immunoglobulins are not caused by gluten.

    Some of them are listed here:

    labtestsonline.org/understa...

    I would get a second opinion about that test!

  • Hi - I was 5 decades pre-diagnosis and I have been really ill. I didn't know what coeliac disease was. Like you, I did exclude gluten once, when I was diagnosed with DH and put on a gluten free diet. I had to endure a gluten challenge in order to have a biopsy - in fact I was bullied into it. I wouldn't do it again, there was no benefit to undergoing either the challenge or the biopsy. My biopsy showed a late stage of Marsh 3 for which there is no treatment except the total exclusion of gluten. I don't get specialist foods on prescription and it sounds as though this will be a thing of the past anyway.

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