Blood Test Accuracy

[angiegoo]

Hi there,

I was wondering if anyone had any ideas as to how accurate blood tests for celiac are?

A couple of months ago I tested positive with:

Gliadin IgA Abs *59 (0-20)

tTG IgA/IgG *273 (0-20)

Yesterday I had the biopsy, and now have to wait another two weeks to find out the results. I have no typical symptoms of celiac disease, but the reason I was tested was because my mum was just diagnosed with it this year.

Does anyone know what I should be expecting from the biopsy?

Thanks

[psawyer]

tTG IgA/IgG *273 (0-20) is a strong positive on a test that is rather specific. False positives are uncommon.

Even if your biopsy fails to find damage to your villi, you should seriously consider trying the gluten-free diet after the biopsy. You say you have no typical symptoms, but there are over 200 known symptoms. It was a year into the gluten-free diet that I read about migraine headaches as a symptom and realized that, after years of having them, I had not had one since going gluten-free. It is ten years now that I have not had one.

[angiegoo]

tTG IgA/IgG *273 (0-20) is a strong positive on a test that is rather specific. False positives are uncommon.

Even if your biopsy fails to find damage to your villi, you should seriously consider trying the gluten-free diet after the biopsy. You say you have no typical symptoms, but there are over 200 known symptoms. It was a year into the gluten-free diet that I read about migraine headaches as a symptom and realized that, after years of having them, I had not had one since going gluten-free. It is ten years now that I have not had one.

Ok, thanks heaps.

Yes, the GI suggested that I try going gluten free even if I have a negative biopsy result, he said I could be gluten intolerant. I was still dozey at the time he told me that though, and I forgot to ask him what the difference is between celiac disease and just being gluten intolerant?!

[nora-n]

There is some new research now into positive ttg antibodies and negative biopsies, and they did find the people that went gltuen free did improve.

Nowadays a lot of celiacs are diagnosed without any symptoms, that is because they now test close blood relatives of diagnosed celiacs.

Often they ahve severe villi damage but no symptoms. Old an young.

They found that 3% of old people have celiac when screening old people in Finland, but they did not have symptoms. The percentage of celiacs increase with age.

[Skylark]

A LOT of people with anti-tTG antibodies find that some subtle health problems go away when they don't consume gluten whether or not the biopsy is positive.

The connection between gluten intolerance and celiac is unclear. People like you with anti-tTG are probably in an early stage of celiac disease even if the biopsy is normal. There are other people with negative blood tests and biopsy who still get very sick if they eat gluten.

[angiegoo]

A LOT of people with anti-tTG antibodies find that some subtle health problems go away when they don't consume gluten whether or not the biopsy is positive.

The connection between gluten intolerance and celiac is unclear. People like you with anti-tTG are probably in an early stage of celiac disease even if the biopsy is normal. There are other people with negative blood tests and biopsy who still get very sick if they eat gluten.

So if it comes back with a normal biopsy is it possible that after a few years the biopsy could come back positive? If so, then would it be a good idea to go and get another biopsy after a few years? Or just go off gluten once some more prevalent symptoms arise?

Thanks for all the input.

[ravenwoodglass]

So if it comes back with a normal biopsy is it possible that after a few years the biopsy could come back positive? If so, then would it be a good idea to go and get another biopsy after a few years? Or just go off gluten once some more prevalent symptoms arise?

Thanks for all the input.

You can still be celiac even with a negative biopsy and negative blood tests for that matter. As far as the biopsy goes damage can be patchy and it can be missed in the areas that they take the biopsy from. I would go gluten free after the biopsy and not even wait for the results. With a firmly diagnosed parent and the strong positive blood work you have had it would be the wise thing to do to prevent damage to your brain, liver, joints, gallbladder, etc. In some GI symptoms are one of the last things to so up and a lot of antibody damage can happen before that occurs.

[Skylark]

People with positive blood tests have been followed in studies. Some people with anti-tTG convert to celiac and a LOT of people with anti-endomysial antibodies convert. You didn't mention getting anti-endomysial done.

If your biopsy comes back normal, you still might try gluten-free for a while. You might be really surprised at which nagging health problems vanish.

You also might think about whether you want to even give your body a chance to develop more autoimmunity. Basically, you can completely avoid the risk of developing a pretty troublesome disease by adopting the gluten-free diet. Remember, you can't "undo" celiac autoimmunity. Once your body learns to attack itself, you become at-risk for other problems like autoimmune thyroid disease and nerve damage.

[angiegoo]

People with positive blood tests have been followed in studies. Some people with anti-tTG convert to celiac and a LOT of people with anti-endomysial antibodies convert. You didn't mention getting anti-endomysial done.

If your biopsy comes back normal, you still might try gluten-free for a while. You might be really surprised at which nagging health problems vanish.

You also might think about whether you want to even give your body a chance to develop more autoimmunity. Basically, you can completely avoid the risk of developing a pretty troublesome disease by adopting the gluten-free diet. Remember, you can't "undo" celiac autoimmunity. Once your body learns to attack itself, you become at-risk for other problems like autoimmune thyroid disease and nerve damage.

Ok, thanks. I guess it would be harder to go gluten free, if I haven't officially been diagnosed as celiac...people wouldn't really understand why I would make that choice if my results come back negative.

In a way I'm hoping the biopsy result come back showing signs of damage.

[ravenwoodglass]

Ok, thanks. I guess it would be harder to go gluten free, if I haven't officially been diagnosed as celiac...people wouldn't really understand why I would make that choice if my results come back negative.

In a way I'm hoping the biopsy result come back showing signs of damage.

For your sake I hope it does also. Keep in mind that not all celiac symptoms are gut related. I do hope you do at least a dietary trial. You may discover that things you never dreamed could be related to celiac resolve. If your producing antibodies that are showing up in blood work damage is being done somewhere.

[Skylark]

Ok, thanks. I guess it would be harder to go gluten free, if I haven't officially been diagnosed as celiac...people wouldn't really understand why I would make that choice if my results come back negative.

In a way I'm hoping the biopsy result come back showing signs of damage.

I do hope you try the diet at least. If it turns you you feel better gluten-free, it's easy to justify. "No, I don't have celiac but I sure am happier without these minor health problems."

If it makes no difference, you probably don't need to be strictly gluten free. The celiac experts at the conference I saw think folks with "latent celiac" (this is what you would be with negative biopsy) or first-degree relatives with celiac are wisest to go light on the gluten. It's not a matter of the strict celiac diet, but rather doing things like cooking rice and potatoes at home instead of eating bread, and choosing different grains for your breakfast cereals. They think eating less gluten lowers your risk of becoming fully celiac.

[angiegoo]

Great, thanks everyone for the helpful info. I think I'm going to wait for the results and consider limiting my gluten intake regardless of what happens.

[angiegoo]

Hi all,

I finally found out my biopsy results. I spoke with my doc over the phone and he told me there was 'some early stages of celiac disease found...' and given my history and bloodwork I probably should 'try going gluten free for a few months'.

Even though he didn't solidly say that I have celiac, I think that from what I've read here on the forum, I can safely say 'I am celiac.' I don't think any damage would appear on a biopsy if you weren't celiac, would it?

Anyways, a gluten free diet is now underway, which I intend to stick to beyond a few months...I'm hoping it won't be too hard to get used to!

Thanks everyone for your help

[ravenwoodglass]

Hi all,

I finally found out my biopsy results. I spoke with my doc over the phone and he told me there was 'some early stages of celiac disease found...' and given my history and bloodwork I probably should 'try going gluten free for a few months'.

Even though he didn't solidly say that I have celiac, I think that from what I've read here on the forum, I can safely say 'I am celiac.' I don't think any damage would appear on a biopsy if you weren't celiac, would it?

Anyways, a gluten free diet is now underway, which I intend to stick to beyond a few months...I'm hoping it won't be too hard to get used to!

Thanks everyone for your help

I know this sounds funny but I am relieved that the biopsy was positive. Yes you can now say you have celiac. I am very thankful for you that the damage is in the early stages. The lifestyle does take a bit of getting used to but you can do it. You may find a bit of withdrawl but not all do. Ask any questions you need to you. We are here for you.