Coeliac disease and selective IgA deficiency

[SkyeBlue]

I have coeliac disease and think I might have selective IgA deficiency and would like to get tested but don't know how. I had a coeliac blood test which came back negative, then an endoscopy and biopsy which was positive. I hadn't been excluding gluten from my diet (I hadn't even suspected coeliac disease) so thought there might be a possibility of selective IgA deficiency. I've just had my annual bloods done and my gp couldn't find the blood test to select for IgA and she didnt know why I wanted to find out about IgA anyway as it doesn't change anything as I already know I have coeliac disease. The thing is i've been ill since November with 4 lots of illness one straight after another. I've had a cough/cold/sore throat & chest 3 times, I've had total laryngitis and I've also had mesenteric adenitis, all in a 2 month period. I can't help but feel like there is something wrong with my immune system other than coeliac disease but how do I find out? Would I need to be referred to an immunologist? What blood test shows IgA deficiency?

Also my 3 children have been blood tested for coeliac disease and I suspected their results would come back negative which they did. However if I do have IgA deficiency and if my children also have it then the standard coeliac blood test would not work for them! Is this in itself a good enough reason to insist I find out whether or not I have IgA deficiency? I think there might be a reluctance from my gp to pursue this for me possibly due to costs to the NHS... I'm fed up of feeling ill constantly it's exhausting me

I would be grateful for any advice or info xx

[Lisahelen]

My nurse had to actually write iga on my blood test twice before it was actually done. Have your b12, folate ferritin and vit d, been tested at all in your previous blood tests?

On diagnosis my iga was 122 on the repeat one six months later it had dropped to 14- still would be told i was coeliac even with this reading, but i was given endoscopy and biopsies done after they were going to initially discharge me with nothing more than ibs! So perseverence can pay off.

[SkyeBlue in reply to Lisahelen]

As far as I'm aware my b12, vid D and others not tested for. My latest blood test last week was just full blood count, thyroid, liver etc just routine annual screen. I should've taken a copy so I know exactly, anyway results due back this week.

Did your biopsy come back positive? Your IgA results of 122 and then 14 are they both classed as high? Do you know what figure is considered a low reading?

[Lisahelen in reply to SkyeBlue]

Sorry ive not replied sooner.

The biopsy was just confirmation of what my original bloods said- so yes it was positive with much villi damage! Consultant not really expecting to see marked improvement when i have to have followup biopsy in June.

Anything above 10 is a positive

4-10 is a possible

Less than 4 should be considered a probable negative. But this is possibly dependant on how the testing path lab interprets results.

[tiredBFmum in reply to SkyeBlue]

A low total iga reading is <0.07 g/l for selective iga deficiency. Please see footnote on p16 of NICE guidelines on coeliac disease. I don't think the ranges given by lisahelen are for diagnosing iga deficiency and don't think they are the 'total iga' ranges. I believe they are the iga tTg which is different.

[Penel]

Perhaps this site may be helpful?

piduk.org/static/media/up/S...

[SkyeBlue in reply to Penel]

Thank you I've been reading this website there's lots of useful info there

[virgolizzy]

Before I was diagnosed with coeliacs, I had my SiGa tested privately, one time it was sky high, the other really low, my GP and later the gastroenterologist couldn't comment on it, as it was not a test they recognised. However, even after being diagnosed a coeliac, I was still catching colds/chest infections all of the time, so much so I was hospitalised after one dreadful bout. The only thing that seems to have helped with this is taking Entersogel during the Winter, since then I have not caught any colds since for 2 years! (fingers crossed).

Anyhow even if you get it tested, there seems little they can do about it, reading the link given earlier, bur definitely keep trying & defnitely get copies of all your results & vit b12 & vit d tested. Good luck

[SkyeBlue in reply to virgolizzy]

Thanks for your reply, I have looked at the entersogel thank you, it appears to be for diarrhoea symptoms is that right?

[virgolizzy in reply to SkyeBlue]

Yes re the Estersogel & also helps with food intolerances - it lines the stomach & as I say for me & colds for whatever reason it seems to help. I think it lines the stomach & repair, thus allowing less naughty particles through & I think it just helps support my immune system, as it can then concentrate on fighting real bugs etc. It may all just be a co incidence, but it works for me, so I am sticking with it!

[Patcy2468]

Hi babe I dont think any of it matters other than you now have celiac disease & its vital to yur health that you stick to a gluten free wheat free diet right away becouse the more you are eaten gluten the more damage you are going to get in your intestines & feel like hell everyday my twin had refractory coeliac disease for yrs & evrry blood test she got it was coming bak negative becouse she had hit & miss with messing up the tests by first eaten loads of gluten & then going gluten free but I couldn't help her becouse she thought she new best untill it turned into divicurtistis but me first I thought I had ibs & suffered really bad with it untill I got so ill & needed a blood transfusion right away becouse I was not getting the right nutrients & eaten gluten unknown to me I had celiac disease & stilll have ibs so if I was you hun I would srart your gluten free diet & get your own toaster becouse even a crumb of your familys food in yours can be destamental to your heath take care patricia

[SkyeBlue in reply to Patcy2468]

Thanks for your reply. I've been diagnosed a year now so have been following a strict gf diet for 12 months. I just keep getting ill (upper respiratory) and can't help but feel there is something else going on with my immune system

[Patcy2468]

Hi babe I think your just like me even sticken to a strict gluten free diet your still not healing as much as you should you could be getten hidden gluten its like a mine field were gluten is in your food cosmetics toiletries processed ready meals & even more thats why I dont trust the labelling thats says gluten free on it becouse it has a mi nute of gluten what celiacs can tolerate but I was still losen weight so I buy brands that say free from gluten & free from wheat & babe get to see a dietitian they can help you a lot & see why you are still getten damange patricia

[gooseberryrose]

If you do have sIgA deficiency, there isn't really much you can do as there is no treatment. All you can do is be extra vigilant about exposing yourself to germs, so extra handwashing, avoiding visiting family and friends when they're sick etc. So yes sIgA deficiency could explain your problems, and/or your villi might still be healing and absorption of vitamins might still be poor so could explain getting run down. Hope you start to feel better! Are you taking any vitamins? If you want tested, you need to get all your immunoglobulins tested, I got IgM, IgG and IgA tested. I have normal levels of them all.

[SkyeBlue in reply to gooseberryrose]

Thanks for your reply 🙂

[tiredBFmum]

They should have taken your total iga reading when they first ran your tests and they may have done. I would get a print out of your original and your children's coeliac blood test results. Guidelines are clear that iga tTg and total iga should be tested nice.org.uk/guidance/ng20/c...