Coeliac tests help please? Newbie

[Chris1802p]

Hi all- I've posted recently in other communities regarding my anaemia, gut trouble etc. I recently had a colonoscopy which was all clear. My Coeliac tests came back negative :

Ttg IgA level: 0.8 u/ml

IgG level: 0.9 u/ml.

Ref ranges: <7 Neg, 7-10 Equivocal, >10 Positive

Because these results are quite low, and I do suffer from allergies and recurrent tonsillitis etc, I asked my GP if I should have my total IgA tested in case I am deficient. It is after all recommended on NICE guidelines and Coeliac UK. But he flatly refused, saying I did not need further testing and total IgA is not available on the NHS (!)

Now what? I don't feel I can demand it or argue further for fear of totally pissing off my surgery!

I posted the above in IBS network but got no replies. I also wanted to attach a pic of the rash I get periodically on my elbows and knees- it starts with a burning feeling then progresses to very itchy bumps and goes away again in about a week. I wondered about dermatitis herpetiformis? It's nothing like the eczema I have elsewhere

[tmoxon]

HI Chris your rash looks very sore, I cannot see from the photo whether you have blisters on the area. My DH was misdiagnosed for years and i was given betnovate cream for eczema which did no good whatsoever.

We are all different but my rash was typical in that it was on both elbows and knees and was itchy and had small water filled blisters. After years it then seemed to change and moved to my back area as well, could get one or two small blisters on my shoulders.

I was diagnosed with CD first and then with DH by a dermatologist who I had gone to see with a mole. The dermatologist said that DH was very common, yet my immunologist said it was rare and the GP said he had not seen it before.

I know exactly what you mean by a burning feeling, I found this feeling more pronounced when it moved to the back area, I could feel it starting from inside if that makes any sense. You could try to give up gluten and see if it improves which may be worth trying, however i went gluten free and unlike others still had the rash and took medication to keep it under control for a while.

You have mentioned you have had the CD blood test and its negative, but as you say you may be someone who doesn't have the antibodies, . I take it you were still eating plenty of gluten when you had them, if not that could be the reason they didn't come back positive. You also mentioned that you had a a colonoscopy which i assume was for your gut trouble however its an endoscope that we normally have to determine whether you have CD and its something a GP can suggest if the blood test doesnt come back as positive.

Is there another GP you could go and see who might be more helpful? I would think that judging on how sore your rash looks in the photo if you didnt want to ask for an endoscopy or further blood tests you could see a dermatologist who may help identify what you have.

The other option would be to write an email to CUK and ask their opinion, if they say that it sounds like you have CD or the rash looks like DH take it to the GP he may find it more difficult to argue with experts. Hope this is helpful

[Chris1802p in reply to tmoxon]

Thank you so much for replying. I’m not sure if it’s blistery or not. The problem with my rash is that it’s so intermittent that it probably wouldn’t be there by the time I got to see a Dermatologist. Maybe I should get my total IgA tested privately to make sure I’m not IgA deficient. If I’m not, then the coeliac tests are presumably correct, and I don’t have CD. Ugh it’s all so confusing

[Chris1802p in reply to Chris1802p]

I was definitely eating gluten when I had the test. The GP is completely sure I don’t have CD due to the test results, so he won’t refer me for further blood tests or endoscopy

[tmoxon in reply to Chris1802p]

HI Chris its not so easy if the rash comes and goes.

If I were in your shoes I would write to CUK via email, they are very good and I am sure will get back to you. Try to provide as much information as possible about your symptoms, the tests you have had.

Hopefully they will write back and advise that you should have the antibody test and you can take this to the doctors, it may also be worth printing out this page which states the antibody test should be done coeliac.org.uk/coeliac-dise...

I think the more you can take to the GP which is in writing the better, that way its in black and white, i would ask them to put in the records that you have asked for the test which is recommended via Nice and they have refused.

The other alternative you have is to go GF to see how you feel but its not easy and if you dont have to I wouldnt recommend it. If you do decided to follow a GF diet you need to be strict to see if it makes any difference. Hope you feel better soon let us know how you get on.

[Chris1802p in reply to tmoxon]

thankyou

[Cooper27]

You can pay for a private test through Medichecks - these are some of the options you have: medichecks.com/search/Iga

[Chris1802p in reply to Cooper27]

Thanks- yes I had my thyroid antibodies and active B12 done through Medichecks, I just can't really afford to keep spending the money on private tests.

[Cooper27 in reply to Chris1802p]

Yeah, and the coeliac tests aren't cheap either! It's an option if you want to be sure of things (they often do special offers too)

[Hidden]

Hi the fact that your ig antibody was tested too could indicate that your iga is low. Igg antibodies only normally tested if your serum iga is low. The machine flags up if iga is low and then igg antibodies are tested.