Antibody Testing - Can I Have Some Feedback

[AliB]

Many of you will be aware that I already think the testing procedure is a load of .....

Anyway. My doctor only requested 2 tests when I went back in January, and I knew no better than to go along with it at the time.

My tTg was 1 (range 0 - 10) and my IgA was 1.54 (range .85 - 4.68).

It came back as 'Negative'. In my innocence, I assumed that anything within the range would constitute a Positive result - well, you would wouldn't you, or why bother to list a range at all? What does the 'range' co-relate to?

Anyway. 2 weeks ago I started getting a 'proper' reaction to gluten. I realised that I had actually been getting glutened all the way through without realising, just putting the back pain and other things down to my still dodgy gut.

As soon as I realised I was still ingesting the gluten, albeit at a low level, my more 'informed' self shot back to the doc's for a retake of the tests.

Acknowledging that I probably know more about this than she does, at my instigation, she put down for tTg again, IgA, IgG, EMA and a Rast test for wheat 'allergy' (useless but included anyway).

Today I checked the results.

The tTg was 0 (well I have been virtually gluten-free for 4 months)

IgA was now 1.46 (I did say 'virtually'!)

IgG was 8.8 (range is 6.5 - 16.1)

They also did an IgM which was 0.63 (range is 0.45 - 2.76)

The Rast was 'normal' (didn't expect anything else)

There is no sign of the EMA unless it was one of the above in a different form.

There is also no indication that with either test, a total IgA was done.

I am just so convinced that I have Celiac, but feel like I am just banging my head against a brick wall! I was not offered a biopsy and to be quite honest I would much rather have a diagnosis without it. Now I have been gluten-free and my gut is healing, they probably wouldn't find anything and I have absolutely no intention of putting myself through any more torture just for that.

To top it all, a month ago I asked one of the doctors for a gene panel. He apparently sent his request to the lab. I rang them today - they have absolutely NO record of me!!! Now I have to go back and get the doc to send through all over again - it takes 2 - 3 months for an appointment and I have lost a month already! Arrrrgh!!!

This testing procedure just stinks. I know I am Celiac, I just can't prove it!

Can anyone 'read' these test results and pick up on anything that has been missed?? I just don't get it - how can Negative be within the ranges??? What is the point of having ranges?

[Jestgar]

The ranges are the normal responses for a population. If you are above the top of the range, your levels indicate a problem. If you are below a range (for the Celiac tests) you are considered normal.

As your responses are all low, you are not producing these particular antibodies to gliadin, or tissue transglutaminase (which is replacing the EMA test).

[nikki-uk]

......but just to add there is a small percentage of coeliacs who do not ever get positive bloods (seronegative).

My husband had negative bloods but as he was so ill and under a gastro he then went on to have a biopsy (thus dx of celiac disease)

Ali, as you've been gluten-free for a while now even if you were offered a gastroscopy, biopsies may be negative and you may NEVER get a positive blood result no matter how much gluten you eat!

[happygirl]

Is your IgA test the AGA IgA? Is your IgG test the AGA IgG? Or are they just the total IgA and IgG tests (which I am assuming since he ran an IgM).

[lizard00]

Ali, I understand your predicament. I'm not sure if my bloodwork would ever show Celiac, and I'm waiting to find out what genes I carry. There's quite a few of us on here who thankfully didn't rely on negative bloodwork.

My advice is to wait it out. You are gluten-free now (I assume) and unless you want to make yourself sick again, eating gluten is really out of the question. I waited 6 months before someone looked past my bloodwork, I was told it was all my fault and repeatedly told I was just stressed out. I had pretty much given up on a diagnosis because I came to a point where I didn't care. I felt better and there was no going back.

My doctor agreed to the DNA test to avoid the redamaging process. If your doc is agreeable to the test, just be patient. You really haven't lost a month, you could still be sick. I know you are in the UK, do you get some sort of relief for gluten-free foods with a diagnosis? Here in the US, we do not. We only get declined insurance policies...

I read that the average diagnosis time is 11 years (here in the US)... 11 YEARS from the appearance of the first symptom until the doctors figure it out. (sorry guys, I can't cite that. I think it was in Danna Korn's book though) Can you imagine??? So, I'm pretty happy to have only waited 6 months.

Eventually you will prove what you already know to be true.

[AliB]

Is your IgA test the AGA IgA? Is your IgG test the AGA IgG? Or are they just the total IgA and IgG tests (which I am assuming since he ran an IgM).

Haven't a clue.

The doc showed me the pc screen and that is all that was written on it. I really am not sure that a Total IgA or IgG was done on either test.

What would the Total IgA etc be called? Just IgA or something else? Even the doctor wasn't sure. She thought the IgA test was the Total test.

It's all so flippin' confusing!

[Rachel--24]

What would the Total IgA etc be called? Just IgA or something else? Even the doctor wasn't sure. She thought the IgA test was the Total test.

Ali, these are the proper tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Total serum IgA is checked to make sure that you are not IgA deficient.

You want to make sure that your IgA and IgG tests were for anti-gliadin antibodies (AGA).

[AliB]

I know you are in the UK, do you get some sort of relief for gluten-free foods with a diagnosis? Here in the US, we do not. We only get declined insurance policies...

We do get help on the National Health, but only if you have an official diagnosis. Other than that we are left to fend for ourselves like you.

Everything here is so expensive, and gluten-free food is exorbitant. A 125gm box of cookies (9 - 12) can cost between 98p and

[happygirl]

If its just an IgA test, its probably the total IgA. However, that is not a diagnostic test of Celiac, nor it the IgG. Those are generic tests to see if you produce that type of antibody. It is not a Celiac test until they test for tTG IgA, AGA IgA, AGA IgG, EMA IgA, etc. The only specific Celiac test you had done was the tTG test, and in terms of accuracy re: IgA deficient, it was accurate because you are not IgA deficient (as shown by the IgA test).

I am not a doctor, that is merely my interpretation.

[AliB]

If its just an IgA test, its probably the total IgA. However, that is not a diagnostic test of Celiac, nor it the IgG. Those are generic tests to see if you produce that type of antibody. It is not a Celiac test until they test for tTG IgA, AGA IgA, AGA IgG, EMA IgA, etc. The only specific Celiac test you had done was the tTG test, and in terms of accuracy re: IgA deficient, it was accurate because you are not IgA deficient (as shown by the IgA test).

I am not a doctor, that is merely my interpretation.

The testing procedure here does not seem to be anything as clear or well-defined as it is over there. I notice most in the States are given a 4-pronged test. Here it was only 2 and I had to ask for the later additional IgG and IgM tests. Yes they were low, but I have been virtually gluten-free for 4 months since the original ones were done. I would really like to have known what the additional tests would have been if they had been done initially.

The stupid thing is that had I had a biopsy done when my stomach was horrendously bad, it might well have picked up damage, but that didn't happen and wasn't even offered or suggested. The return to the docs 2 weeks later for the results revealed a 'negative' result and because my stomach problem had been resolved by the gluten-free diet they washed their hands of me and left me to get on with it, no help or advice or anything - thank goodness for this site!

Amongst other things I have had problems with my stomach for years including IBS but it had got particularly bad over the 6 months previous to the collapse and subsequent tell-tale stools and diarrhea. I was losing weight - but because of that I picked up the Celiac link pretty quickly and nipped it in the bud by going gluten-free. Had I not known and had ended up continuing to deteriorate then the damage may have been eventually great enough to be blatantly obvious. It almost seems that by stopping myself from getting any sicker I have shot myself in the foot as far as getting a diagnosis is concerned!

[nikki-uk]

Ali, these are the proper tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Total serum IgA is checked to make sure that you are not IgA deficient.

You want to make sure that your IgA and IgG tests were for anti-gliadin antibodies (AGA).

The testing in the UK is a little different.

Docs here don't generally use the 'anti-gliadin' tests anymore.

Nor do they routinely test IgG or IgM.

There would usually be a haemoglobulin test thrown in there with the tTg and EMA

The 'Total serum IgA' counts whether you have enough immunoglobulins to produce sufficient anti-bodies.

A higher than average proportion of coeliacs have 'IgA deficiency'

This means they do not produce enough anti-bodies to get a positive blood test.

Ali - you might want to consider getting a gene test privately through Open Original Shared Linkas I don't think the NHS will do this.

...and OMG!!!...Food prices!!!

We are a family of 5 with3 gluten-free.....GAHHHHHH!!!!!!!!!!

[ravenwoodglass]

The return to the docs 2 weeks later for the results revealed a 'negative' result and because my stomach problem had been resolved by the gluten-free diet they washed their hands of me and left me to get on with it, no help or advice or anything - thank goodness for this site!

!

It is too bad they won't give you a diagnosis based on the dietary response. I also show up negative on blood tests and it can be frustrating and life threatening when we do. I am so glad you were able to figure out the problem and are on your way to recovery. Doctors really are not a lot of help for most of us at this point.

I feel for your frustration and I doubt it will make you feel any better but the prices over there are right in line with them here. In fact I would love to find a bag of cookies for $2!

[nora-n]

Hi,I am in Europe too, in Norway, and the prices are at least 50% higher....

We get cash from the government if diagnosed.

My daughter got an official diagnosis with both negative blood tests and biopsy, because of symptoms, but she could choose wether she wanted to do this dreadful gluten-free diet and get a diagnosis, or not. She would nmever have gone back on gluten, she was so sick for years.

I dit get a diagnosis, as I was not beck on gluten long enough for the gluten to show any damage...should ahve continued the challenge. I had doctors that only look at tests and do not ask how I feel. Now they want to send me to a shrik because I eat gluten-free, and I lost 20 kg. A gene test was negative too, it was not hard to get a gene test.

They have phased out the antigliadin test here most places in this country, and only do the ttg IgA and the total Iga. IgG version is only done if IgA is below detection limit.

Some places that do research can do more tests. One is entitled to a second opinion. I might do it one day.

I just do not buy gluten-free bread, firstly it contains milk, secondly wheat starch. I bake occasionally but I usually do not eat bread. I eat low-carb, like proteins and veggies and not much fruit either. I bake gluten-free apple cake and occcasionally some gluten-free cake for everyone in the house (I get DH itches from handling gluten)(maybe the gene test was wrong, like another person posting here phoned the lab and said she doubted the negative reslts, and she turned out to be DQ8 after all)

nora

[AliB]

The testing in the UK is a little different.

Docs here don't generally use the 'anti-gliadin' tests anymore.

Nor do they routinely test IgG or IgM.

There would usually be a haemoglobulin test thrown in there with the tTg and EMA

The 'Total serum IgA' counts whether you have enough immunoglobulins to produce sufficient anti-bodies.

A higher than average proportion of coeliacs have 'IgA deficiency'

This means they do not produce enough anti-bodies to get a positive blood test.

Ali - you might want to consider getting a gene test privately through Open Original Shared Linkas I don't think the NHS will do this.

...and OMG!!!...Food prices!!!

We are a family of 5 with3 gluten-free.....GAHHHHHH!!!!!!!!!!

[AliB]

Hi,I am in Europe too, in Norway, and the prices are at least 50% higher....

We get cash from the government if diagnosed.

My daughter got an official diagnosis with both negative blood tests and biopsy, because of symptoms, but she could choose wether she wanted to do this dreadful gluten-free diet and get a diagnosis, or not. She would nmever have gone back on gluten, she was so sick for years.

I dit get a diagnosis, as I was not beck on gluten long enough for the gluten to show any damage...should ahve continued the challenge. I had doctors that only look at tests and do not ask how I feel. Now they want to send me to a shrik because I eat gluten-free, and I lost 20 kg. A gene test was negative too, it was not hard to get a gene test.

They have phased out the antigliadin test here most places in this country, and only do the ttg IgA and the total Iga. IgG version is only done if IgA is below detection limit.

Some places that do research can do more tests. One is entitled to a second opinion. I might do it one day.

I just do not buy gluten-free bread, firstly it contains milk, secondly wheat starch. I bake occasionally but I usually do not eat bread. I eat low-carb, like proteins and veggies and not much fruit either. I bake gluten-free apple cake and occcasionally some gluten-free cake for everyone in the house (I get DH itches from handling gluten)(maybe the gene test was wrong, like another person posting here phoned the lab and said she doubted the negative reslts, and she turned out to be DQ8 after all)

nora

That is so great Nora that you can get a diagnosis there just from dietary response alone. How I wish they would do that here - it would pick up so many sufferers. Those who are 'silent' would unfortunately still slip through the net, though, which is where the IgA system needs a rethink.

Several Coeliac specialists believe that ANY IgA response to gluten is positive for Coeliac and I am sure they are right. If the powers that be could accept that then it is far more likely that even 'silent' Coeliacs would be more likely to be picked up.

In those who do not follow the 'normal' symptomatic route, such as those who have been diagnosed as Schizophrenic for instance, Coeliac is usually the last thing that would ever be considered as a cause, yet so many have completely recovered on a gluten-free diet. Dietary response is very often the ONLY sign that an individual is Coeliac/gluten intolerant.

I don't consider the diet to be that dreadful at all, just annoying from the point of view that we have to constantly check everything for gluten. That is not the diet's fault, but the manufacturer's. The fact that thousands and thousands of people are gluten intolerant has completely slipped them by and they have no concept of how big a problem this is. Everything revolves around wheat and gluten and this world has little consideration for those who cannot tolerate it.

I too try to eat fairly simply - I can't cope with too much carb anyway and need to keep low-carb, so fortunately gluten-free is not a huge problem for me. I don't miss bread at all and am quite happy to crunch on my rice-cakes as long as they have some kind of topping - eggs, fish or ham, etc. I can't tolerate dairy either so can sympathise with you on that.

If you have DH then you ARE Coeliac. Your gene test must have been faulty - I would think it highly surprising if you did not carry at least one of the genes. That's the thing with testing - how can you be sure it has been done correctly - I have seen mentioned that you can sometimes get different results from different labs. How daft is that?! Unless you were able to get the same test repeated elsewhere, how would you know whether the first one was accurate or not???