Blood test results, I think positive?

[Acew0531]

So I have had a lot of symptoms, stomach problems, headaches, I’m deficient in iron, b12, vitD, calcium, folate despite being on high doses of supplements for years. Finally got the celiac blood test done and the result, waiting for the specialist to call hopefully tomorrow.  But it says that values over 30 are considered positive, and it says that my value is 728. Which seems clear to me I have it, but seems like an alarmingly high number. Anyone else with similar results? 

[trents]

Welcome to the forum, Ace!

Can you be more specific about the particular antibody test or tests that were done? There are a number of antibody tests that can done for celiac disease. The most commonly ordered test is the tTG_IGA. It is the most specific for celiac disease but not the most sensitive. Maybe this will help you to get a flavor for what I mean: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Acew0531]

1 minute ago, trents said:

Welcome to the forum, Ace!

Can you be more specific about the particular antibody test or tests that were done? There are a number of antibody tests that can done for celiac disease. The most commonly ordered test is the tTG_IGA. It is the most specific for celiac disease but not the most sensitive. Maybe this will help you to get a flavor for what I mean: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Sorry for not including that! It was the tTG IGA test. 

[trents]

I think that is the highest tTG-IGA value I have seen reported on this forum. Are you sure the laboratory doing the analysis didn't mistype when entering the report data? If that is a valid number, there is no wonder you are not assimilating the vitamin and mineral supplements you are taking. My guess would be your villi are badly damaged. Do you mind me asking how old you are?

Edited October 4, 2021 by trents

[Acew0531]

1 minute ago, trents said:

I think that is the highest tTG-IGA value I have seen reported on this forum. Are you sure the laboratory doing the analysis didn't mistype when entering the report data? If that is a valid number, there is no wonder you are not assimilating the vitamin and mineral supplements you are taking. My guess would be your villi are badly damaged. Do you mind me asking how old you are?

As far as I know they didn’t mistype it, it’s marked as high as well but I really couldn’t say for sure, definitely is something I will ask about though! It did seem alarmingly high to me 

I recently turned 30, I’ve had symptoms for over 15 years but (iron dropped around 17 years ago and never came back up) but I spent most of my life being told it was anxiety and stress and poor diet and to just go eat red meat. It wasnt until my platelets became elevated consistently that I finally got referred to a specialist who actually took me seriously and ran extensive blood tests  

[trents]

All your symptoms are common to celiac disease except maybe the elevated platelet count. I haven't heard that one before. 

[Ivana]

Hello, my ttg iga were around 980, with positive above 20, and marsh 3C damage. They fell to 38 after 11 months, my iron and ferritin rose to normal levels (from extremely low). I am 40, probably had silent celiac for 20 years (anemia the only problem, was never on supplements though and didn't feel unwell). In a few days (3 months after the last test when they were 38) I will get retested and see if they fell below 20. I was also very worried about the high number, but where I live there were even people with numbers up to 2000 and their numbers also fell drastically in a relatively short time so I was not that worried in the end. I can also see that my villi healed at least to an extent and now I am absrobing iron (I only had over the counter iron supplements for about a month after the diagnosis). I hope this makes you feel better! Best wishes!

[cristiana]

Hello Ace

Yes, I've read the odd report of high numbers like that.  I think we might see a few more reports here bar the fact that in some countries, including this country (the UK), the usual cut off point when labs report back  appears to be 100.    So even if the number exceeds 100, you will simply read >100.  That's what my report said.

I wish this hadn't been the case as I strongly suspect that my numbers were high like yours at diagnosis.  I've stuck to a gluten-free diet, more rigidly than some of my friends with coeliac, hardly ever eating out whilst they continued to do so, etc etc, and yet their numbers normalised so quickly.   

I have often wondered if the main reason my levels have taken so long is because mine had to fall from a higher number.   In fact, my nutritionist has surmised the same thing. 

That said, I do share a house with gluten eaters and I've made a few mistakes on the way, and it is thought that some coeliacs are more sensitive to trace amounts of gluten than others, so that could be part of the reason too... It could well be that yours will come down much faster than mine.   It would be great if in a year (or less) you were posting that they had normalised really fast!

Anyway, as my consultant says, the most important thing is that the numbers fall.

Cristiana

 

Edited October 4, 2021 by cristiana

[Oldturdle]

7 hours ago, trents said:

I think that is the highest tTG-IGA value I have seen reported on this forum. Are you sure the laboratory doing the analysis didn't mistype when entering the report data? If that is a valid number, there is no wonder you are not assimilating the vitamin and mineral supplements you are taking. My guess would be your villi are badly damaged. Do you mind me asking how old you are?

Trent's, if this is a contest, I think I am winning!  Last December, when diagnosed with celiacs, my tTG-IGA was >2,500.  Normal was <14.9.  Three months later, after going gluten free, My numbers dropped to 684.3, with normal being <24.9.  I was 68 at diagnosis.

[cristiana]

3 hours ago, Oldturdle said:

Trent's, if this is a contest, I think I am winning!  Last December, when diagnosed with celiacs, my tTG-IGA was >2,500.  Normal was <14.9.  Three months later, after going gluten free, My numbers dropped to 684.3, with normal being <24.9.  I was 68 at diagnosis.

That deserves a medal!  Or several...🥇   🎖️🏅

Out of interest, Oldturtle, are your figures normal now?

I'm now really cross I didn't know my own figures!  We could have a competition!  😄

[trents]

4 minutes ago, cristiana said:

That deserves a medal!  Or several...🥇   🎖️🏅

Out of interest, Oldturtle, are your figures normal now?

I'm now really cross I didn't know my own figures!  We could have a competition!  😄

With no instant replays, please!

[Oldturdle]

1 hour ago, cristiana said:

That deserves a medal!  Or several...🥇   🎖️🏅

Out of interest, Oldturtle, are your figures normal now?

I'm now really cross I didn't know my own figures!  We could have a competition!  😄

I will be getting rechecked one year out, probably Decemberish.  I have heard it can take 2-3 years for old toads like me to return to normal.  Meanwhile, I am maintaining my gluten free diet.  What more can I do!?  I feel fine, and am gaining some much needed weight. 

     Thanks for the award!  I am working on my acceptance speach!

[Oldturdle]

1 hour ago, trents said:

With no instant replays, please!

Slight error in my reporting.  My 3 months into going gluten free lab results had normal being 14.9, not 24.9.  Doesn't make a big difference!

[cristiana]

1 minute ago, Oldturdle said:

I will be getting rechecked one year out, probably Decemberish.  I have heard it can take 2-3 years for old toads like me to return to normal.  Meanwhile, I am maintaining my gluten free diet.  What more can I do!?  I feel fine, and am gaining some much needed weight. 

     Thanks for the award!  I am working on my acceptance speach!

I wonder if my age is also against me.  Mine was a midlife diagnosis - a variation on that theme.  

Looking forward to the award speech on youtube later.  Send us the link! 

[trents]

Age is always against you except for wisdom and senior discounts.

[Oldturdle]

37 minutes ago, cristiana said:

I wonder if my age is also against me.  Mine was a midlife diagnosis - a variation on that theme.  

Looking forward to the award speech on youtube later.  Send us the link! 

If I may get nosey, how old were you when you were diagnosed?  How were you diagnosed?  Any family members with celiacs?

[cristiana]

51 minutes ago, Oldturdle said:

If I may get nosey, how old were you when you were diagnosed?  How were you diagnosed?  Any family members with celiacs?

Mid-forties.  No known relatives.  When I was diagnosed I was asked to get my first degree relatives checked but here in the UK doctors often won't pursue this unless there are symptoms.  I'm sad about that as I think my mother may have had it.  I was diagnosed by blood test and endoscopy after weird aura migraines, mouth ulcers, numbness, tingling, anemia etc - the gastric symptoms were the last thing to show.  Glad they turned up otherwise I still think the doctors still wouldn't know what was wrong!

[yuluyouyue]

11 minutes ago, cristiana said:

Mid-forties.  No known relatives.  When I was diagnosed I was asked to get my first degree relatives checked but here in the UK doctors often won't pursue this unless there are symptoms.  I'm sad about that as I think my mother may have had it.  I was diagnosed by blood test and endoscopy after weird aura migraines, mouth ulcers, numbness, tingling, anemia etc - the gastric symptoms were the last thing to show.  Glad they turned up otherwise I still think the doctors still wouldn't know what was wrong!

Christiana, it is the same where I live, they are not proactive about checking for celiac in relatives. My Mom doesn't show any signs of it, so her doctor didn't order tests. I was still feeling uneasy about it so I took her to a private lab to check antibodies. Luckily that only cost 30 euro. And luckily, her antibodies were something like 0,4 (how I envy this number! ) Now I need to do the same with my brother, ie. take him by the hand or otherwise he will never go himself. I am pretty sure it is my Dad though who has it, but he is another story and will not go get tested easily, too stubborn, etc...