IgA Deficiency?

[Lou may]

Hi all, 

I had a look on the forums and wasn't able to find what i wanted to ask regarding IgA deficiency. If you guys do know of other forum topics that has a lot of in depth knowledge on this do let me know. 

I live in London, and read on other forums on other sites that IgA deficiency blood tests are allowed to be requested on the NHS. I have had false negative blood tests on the three occasions i've had a celiac panel tested. I do however have most symptoms associated with having IgA deficiency. And ignorantly only learned about these symptoms last night, luckily enough I had a Doctors appointment earlier today and brought it up. I also went to request bloods to check my B12, iron and vitamin D levels (as they have been low in the past many times) Maybe I should have asked for those bloods last. Because my GP said that checking b12 would tell me all i needed to know and if those levels were low then they would do an IgA deficiency blood test. 

But then he went on to say that, if my celiac panel came back negative then its highly unlikely I don't have iga deficiency...? 

Please correct me if im wrong, but I thought you could rule out Iga deficiency with a blood test if you kept on getting negative celiac panel results? I have heard some people test false negative on celiac panel, but end up still having a problem with Gluten, or even end up having celiac, and that in actuality the bloods were just false negative... 

I suspect that that could be the case in my situation.. maybe. Because i get really ill if i eat gluten. but begin to thrive when I exclude it from my diet. 

In regards to the Iga deficiency I have always had recurring infections, and they have always taken longer to recover from than the normal person. I have also always suffered with urinary/genital infections - and also learned that an iga deficiency can affect that too.. I have ALWAYS had some form of IBS even as a small child. And learned that is ALSO something associated with the deficiency. 

It's frustrating and I feel that GP didn't really have a great understanding at all, and was sent away again feeling like i'd taken two steps back. 

Has anyone (especially in the UK) ever suspected they may have an IgA deficiency and have then gone on to request that blood test on the NHS? 

I have heard from like only ONE person who was granted the iga deficiency AND celiac genetic testing on the NHS. My GP said they are so adamant to run the Iga deficiency blood test due to funding, but whats ironic is that I'm waiting to be seen by a gastroenterologist who will most likely want to do a biopsy anyway, isn't that more expensive?

 

Anyway forgive my rant, it's been 15 years of going back and forth from specialists and doctors who don't seem to have a clear grasp on what direction to go in. 

I would really love it if anyone could share their experiences! 

 

Here is the link that made me understand iga deficiency and how it can affect celiac blood testing. 

 

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[Miss-L]

Hi,

 I’m newly diagnosed (December, Scotland (UK)) but just wanted to provide some advice on my diagnosis incase it can help. During my blood tests for Coeliac, it was discovered that I am iga deficient & they couldn’t complete one of the tests as the iga antibody didn’t exist to test for Coeliac. All my other bloods came back negative. Due to the iga deficiency, I asked my doctor to refer me for a biopsy and it was from the biopsy results that it was confirmed that I have coeliac disease. 

My doctor said that I was her only second patient to have been diagnosed iga deficient so she didn’t really have a great understanding of what it meant and neither has any doctor that it’s been brought up with afterwards. Anyway, my b12 levels at the time were normal, all my bloods were. I later developed b12 deficiency but I wasn’t deficient when it was discovered that I was iga deficient. Though I’m now curious to find out what my b12 levels were last year during the blood tests.

Sorry this doesn’t answer your questions. I’ve been thinking of going privately for additional tests as now I’ve eliminated gluten, I’ve noticed that I also react to dairy and a few other food products. Perhaps the private route might give you quicker answers?

 

[Lou may]

@Miss_L Thank you so much for the reply I really appreciate you taking the time to tell me your story. Its good to know in a way that i'm not the only one who has had similar experiences in regards to testing Iga deficiency. 

My GP mentioned that if my b12/ iron/ Vit D are low (AGAIN) then they'll think about it. But he also said NHS don't properly know how to test for IGA deficiency. so im very confused. because he also said that if my celiac panel was negative then i "probably" didn't have an iga deficiency. but knowing that you had negative celiac panel but ended up being iga deficient kinda makes me feel less mental. As many GP's have told me all my pain is just in my mind. 

So thank you for sharing. 

Can I ask, did you ever have any issues with recurring infections (throat, nose, chest, stomach infections)  

Thank you 

[cyclinglady]

Hi!  

I will add my two cents to the conversation.  I am not a medical doctor. 

An IgA deficiency test is typically run with the celiac panel.  In the case of celiac disease testing, it is used only as a control test.  If you are IgA deficient (producing no IgA antibodies) then the celiac IGA tests [DGP, TTG and EMA) are not going to work.  The doctor then run the IgG celiac test versions.  

The IgA deficiency test really needs to be close to zero.  Just under the lab range means that the body is producing enough IgA antibodies that can validate the celiac IgA tests.  

I am not knowledgeable about actually being IgA deficient as I am the opposite.  I produce way too much IgA which is attributed to my multiple autoimmune disorders.  The simple IgA deficiency test used for celiac disease testing is not expensive, so I am not sure you and your doctor are actually talking about the same test.  

Some celiacs do not produce any antibodies that show up in blood work.  if celiac disease is strongly suspected, the GI will proceed to biopsy obtained via endoscopy.  

You probably have seen this information, but maybe others in the forum have not:

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[Lou may]

@cyclinglady

Hello! So sorry I didn't get any notification that you had replied to this! very frustrating, thank you for replying though! 

yes you're right, whenever I ask to have my blood tested for iga deficiency my doctors just look at me perplexed and tell me if anything was out of sorts on my celiac panel that they might check that.. but because both my celiac panels have come back negative they've told me to carry on eating gluten, but it seems my symptoms are worse for doing so. Which is why I thought it might be worth being checked to see if i have problems producing IGA antibodies, if that makes sense. 

Im just trying to be proactive and trying to get the ball rolling so to speak, I've been waiting on NHS for an initial appointment with a specialist for 5 months now and have two more months to wait, but trying to do all i can at the moment, because im in so much pain. I know i will eventually most likely have to have endoscopy like you suggested, but that will be another 5 months. So thats why i'm trying to do all i can, i'm fed up like so many of being told im fine, when im in agony. 

I thought you could just ask for igg Test to see if there is an iga deficiency but as you say those tests won't help if i do have a deficiency.. then could you suggest what i do ask for? 

I have recurring low levels of Vit d, b12, iron and have had issues with FBC test results (something to do with elevated lymphocytes for over 5 years now - but docs never looked into it) 

all very confusing. sorry if i have only added more confusion. but hope i've communicated coherently. 

[cyclinglady]

@Lou may—

Exactly which celiac tests did the NHS run (I am in the US)?  I can see the NHS site does not list the celiac tests.    I guess they do not want to disclose extensive information to the general public (non-medical).  It is probably a cost saving measure, otherwise, people might demand too much!  

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 Here in the US, lab test companies are very open because they want to make money and you can pay for them out-of-pocket (cash) and can be  (in many cases and depending on if you reside in a larger city), ordered without a medical doctor.  I just picked one US lab at random for the sake of this discussion:

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From a celiac advocacy website, I was able to find the UK recommended tests:

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In this posting, they recommend the TTG IgA and the IgA deficiency test as a start.  Are you sure your doctor did not order both these tests?   It also appears that  the DGP tests are not used by the NHS.   It is a shame, as only the DGP IgA has been the only positive test result I have had, even in follow-up testing.  The TTG tests are good, but do not catch all celiacs.  You might have to push for an endoscopy if you are unable to get the other celiac blood tests (through NHS or cash lab).  

There is always the option of going gluten free without a formal diagnosis.  Is there a reason you Want to have a diagnosis?  I get the low iron (ferritin), but are you Vegan or Vegetarian?  That can impact B-12.  Vitamin D?  You do live in the UK!  

I am not knowledgeable about the UK healthcare system nor do I know your health history.  Even more important, I am not a doctor!  

I hope you figure it out.  

[Lou may]

@cyclinglady

Thank you for the reply. Yeah, its tricky to know what they include on the celiac panel, they usually don't like to tell you what is included in the panel. But I had an appointment today and brought up iga deficiency and having the bloods done to get that ruled out and my GP said the blood test can be run but as i have a specialist appointment June 18th that I should ask the specialist about it instead. So that makes me think that the iga deficiency blood test isn't specifically included in a celiac test. 

I have to have a biopsy at some point anyway thats inevitable, but I thought with the false negatives, it would be worth trying to check for an iga deficiency before that happened, because it might get me answers faster. As I have been told by many celiacs, even with a biopsy they can come back negative but you can still have celiac disease or some sensitivity. 

I have given up gluten in the past and have been better for it, but wasn't as anal in trying to exclude all gluten, its hidden in so many things and i guess when you don't know for certain you sometimes aren't as militant about it. So I think it could help, and my GP has suggested i get a diagnosis because it could be something else. so i guess i'll wait and see. 

I might try and get a genetic test, heard they help. 

 

And yes UK isn't the sunniest place in the world haha 

 

Thank you so much for the comments! greatly appreciated 

 

x

[squirmingitch]

No, the genetic test does NOT confirm celiac. Approximately 1/3 of the population has the genes for celiac but only a tiny portion of those people will end up presenting with celiac disease. The only thing the genetic test is good for is ruling OUT the possibility of celiac disease and even then there are rare, rare cases of true celiacs who do not have those common celiac genes.

[Lou may]

@squirmingitch hi, thanks. I am well aware the genetic test is not a tool used to diagnose celiac. But for me personally I don’t see any harm in doing the genetic test whilst I wait for endoscopy and biopsy. ( there’s a very long wait on nhs) so I will probably do it for a peace of mind whilst I wait. 

[squirmingitch]

Sure. There's no harm at all in doing it if you want to. I just wanted to make sure you understood as we get a lot of people on here who do not and they think if they have the genes then they have celiac.

[GFinDC]

When was trying to find out if I had celiac disease, I had a 4 month wait for a specialist to see me.  So I didn't wait, I went gluten-free right away.  By the time I got to see the specialist my antibodies had declined to where they didn't read positive.  I stayed gluten-free anyway because it was obvious to me that gluten was a problem for my body.  They used to have a tax deduction for a portion of gluten-free food costs in the UK but I am not sure that is still in place.

The treatment for celiac disease is the same if you have a formal diagnosis or don't.  Stop eating gluten for life.  I suggest you do that and get started on healing as it takes months or more to recover from celiac damage for many.  There is little benefit to formal testing for some of us.  Some people do want a formal diagnosis for various reasons.  But it doesn't change anything on your situation except to delay the start of your healing IMHO.  Something to think about anyway.

[cyclinglady]

1 hour ago, GFinDC said:

When was trying to find out if I had celiac disease, I had a 4 month wait for a specialist to see me.  So I didn't wait, I went gluten-free right away.  By the time I got to see the specialist my antibodies had declined to where they didn't read positive.  I stayed gluten-free anyway because it was obvious to me that gluten was a problem for my body.  They used to have a tax deduction for a portion of gluten-free food costs in the UK but I am not sure that is still in place.

The treatment for celiac disease is the same if you have a formal diagnosis or don't.  Stop eating gluten for life.  I suggest you do that and get started on healing as it takes months or more to recover from celiac damage for many.  There is little benefit to formal testing for some of us.  Some people do want a formal diagnosis for various reasons.  But it doesn't change anything on your situation except to delay the start of your healing IMHO.  Something to think about anyway.

I agree.  If you know gluten makes you sick, you avoid it at all costs.  My hubby is not formally diagnosed, but he has been gluten-free for 17 years, 12 years before I was formally diagnosed!  Does he cheat?  NEVER!   Is he some kind of stoic person with a will of iron?  No.  

I do fall off the diabetic bandwagon though.  Because those efforts are preventative and symptoms will not occur for a decade or more.    What do I do?  Keep up on diabetes forums and think about older family members who had failed eye sight, kidneys and some amputations.  Yikes!  

 

[Lou may]

@GFinDC

Hi! thanks for your comment, you're right yes. If I had it my way I wouldn't be eating gluten, but my gp feels I need to rule out other IBDs in case they are missed, things like chrons, IBD etc. 

Thanks again