What Is Normal For First Ttg Antibody Check?

[designerstubble]

Hello

 

Had my blood taken 2 weeks ago, first tTg antibody test done since diagnosis last October. Normal protocol  here in UK is they write to you to let you know the outcome if everything is OK, but I have just received a letter with a new appt for my blood results. Doesn't bode well.

 

The main problem I have is that when they diagnosed me, the labs didn't supply an antibody level, just a Yes/Positive response, so I have no idea what my antibodies were at time of diagnosis.

 

I presented with classic symptoms, diarrhea, bloating, weightloss, pain, severe anaemia, low vit d etc, so I reckon I probably was at a high level of antibody at diagnosis.

 

I'm a stress head. I'm having lots of other problems going on at the moment (health related, heart, allergy, skin, also continued diarrhea)... I REALLY don't want to spend the next two weeks worrying about this too... Really struggling at moment.

 

I obviously appreciate that everyone is different and there is no rule, but I just want an idea of what I could expect numbers to be at given that I have been REALLY strict, and gluten-free 8 months...

 

I know labs in UK might have different ranges here, if 300+ is maximum, would I be expecting a drop to 250 in 8 months, or 100?? Or should I expect to show an almost full recovery?? Again, I know there are no givens, just looking for an idea, don't want to freak.

 

Appreciate any help or guidance

[GottaSki]

Good Morning!!!

 

Do you have the new tTG result in a number value with range?  Did they run only the tTG during this recent test?

 

I have seen it take some time to get the antibodies all the way back to normal range -- as you mention the most frustrating part is you don't know your starting number for comparison.

 

Given you have been strictly gluten-free for many months and you have had some health improvements that your starting number was quite high and thus has improved.  As I have know way of knowing for sure I suggest you do your best to hang tough, eat clean and re-test at three month intervals until your antibodies are all playing nice.

[nvsmom]

I agree with with Lisa, if you hav had health improvements, and your numbers have gone in a downward direction, then you are probably doing well. retesting will help prove that.

 

My tTG Iga went from >200 to 34 (reference range 0-20) in one year gluten-free. I think that's slower than many but it is getting there. I also have a thyroiditis and that could help keep my number elevated. On the other hand, my EMA IgA went from positive 1:40 to negative; since the EMA is thought to show advanced villi damage, I'm happy with that.

[designerstubble]

Thanks for that girls

 

Am just going to post some results I received on a thread... Maybe you could help?? Doctor couldn't tell me anything??? Alas I am doomed with these doctors. But, maybe someone on here can??

 

Thanks for all you advice, hopefully someone can tell me what it all means.

 

And hopefully, it's good or ok news, can't cope with more crap!!

 

Thanks again 8D

[designerstubble]

Ok, I've just learnt for myself that it isnt good news

It seems my levels are still very high after 8 months. I'm so upset, can't believe it. I am as gluten free as I can be. The only gluten in my house is my husbands beer, but he knows that i won't go near him if he's drinking it, we don't even kiss through my own paranoia.

 

I don't know what else to do?? What do you do if your levels are high??

 

Btw they were:

Anti-tissue transglutaminase level 1.2 u/ml (0-10)-Tissue transglutaminase equivocal range = 7-10u/ml

 

Seems as my readings are pretty stellar. What do you do in this situation?? Is this more indicative of refractory?? Since I'm still passing loose bowel movements (and undigested food sometimes)...

 

I guess that's why they are calling me in. To tell me how I have been non compliant. Even though I couldn't be more gluten free if I tried.

 

Its devastating after all the hard work, it really is.

[GottaSki]

Ok, I've just learnt for myself that it isnt good news

It seems my levels are still very high after 8 months. I'm so upset, can't believe it. I am as gluten free as I can be. The only gluten in my house is my husbands beer, but he knows that i won't go near him if he's drinking it, we don't even kiss through my own paranoia.

 

I don't know what else to do?? What do you do if your levels are high??

 

Btw they were:

Anti-tissue transglutaminase level 1.2 u/ml (0-10)-Tissue transglutaminase equivocal range = 7-10u/ml

 

Seems as my readings are pretty stellar. What do you do in this situation?? Is this more indicative of refractory?? Since I'm still passing loose bowel movements (and undigested food sometimes)...

 

I guess that's why they are calling me in. To tell me how I have been non compliant. Even though I couldn't be more gluten free if I tried.

 

Its devastating after all the hard work, it really is.

 

I don't understand the results as you typed them.  I think it says you tested at 1.2 and normal range is (0-10).  If this is the case you are not high at all.  Sorry if I am not understanding your results.

 

Edited to add...way too early in the game to start thinking refractory -- IMO -- you have had improvement in some symptoms -- healing can take longer than 8 months.

[designerstubble]

I don't understand the results as you typed them.  I think it says you tested at 1.2 and normal range is (0-10).  If this is the case you are not high at all.  Sorry if I am not understanding your results.

 

Edited to add...way too early in the game to start thinking refractory -- IMO -- you have had improvement in some symptoms -- healing can take longer than 8 months.

I'm confused. I typed them exactly as they appeared on my lab report. I thought the same as you to start with and I was elated. Then I researched and found out that 7-10 u/mL is a high reading. Unless thats a reference for labs.

 

I don't understand why it says 'Anti-tissue transglutaminase ' and then under result it says' tissue transglutaminase'??? 

 

I read it to mean my Anti-tissue transglutaminase is 1.2 and my tissue transglutaminase is 7-10. Am I being a total idiot?? I SO hope so, right now I'd LOVE to be a complete and utter silly *expletive!* that has gotten her knickers in a twist! 

 

Thanks for responding I do really appreciate it, and I know you are right about refractory. I think my adrenals are way off lately and I just can't cope with the scares anymore, I get straight into my tunnel of doom. 

 

You know, I'd just like a few months of getting on with it instead of, "here's another health problem this month, and oh, would you like another, yes, have some heart trouble while you're there too, lets send you to the dermatoligist, and don't forget the allergy clinic for your 40 intolerances!). 

 

And relax!

Lisa, as always, apologies for the rant (bad day!), and THANK YOU for being there as usual. 

[designerstubble]

For your ref I'm typing EXACTLY as it appears:

 

Code                                                           Result

Anti tissue transgluaminase level                 1.2u/mL (1-10)-Tissue transglutaminase equivocal range =7-10u/mL

 

 

Is it just telling me what the equivocal range is? OR is it telling me my Tissue transglutaminase is in the equivocal range??

 

Whats the diff between Anti-tissue transglutaminase and Tissue transglutaminase levels?

 

Thanks again for ALL your help you cheered me up btw, thanks, feel better

[GottaSki]

They mean the same thing...but this is strange wording.  I still think your result is 1.2 with "normal" range being 0-10 and that you are well within normal -- perhaps your doc has a copy of your original antibody test in your file with the exact numbers on which tests -- positive is positive...but it sure does help to know how much it has lowered after over six months gluten-free!!!

 

Hang in there and you never bother me....I've been in your shoes -- hope they are cute today

[nvsmom]

My interpretation is the same as Lisa's. To me, it looks like your normal now.... But I don't speak "medical-ese". That wording is really strange.

[designerstubble]

Thanks Lisa

My docs are completely useless and I have to fight them for copies of any bloods. (They think I'm a trouble maker for even asking questions).

I'm starting to think you are right you know, that my numbers are low and within normal range. I know it's not as good as being told the biopsies are normal but it's a bloody good place to start! In fact it makes me very happy! Just knowing that I'm doing something right, and it's one less thing to worry about with my health!!

I've been reading that ttg is actually a measure of gut damage? Is that right? I thought it was a measure of antibodies! I'm so naive still.

Thanks Lisa, my shoes are SO cute today!! Hugs

[Kamma]

Morning, Designer Stubble...

 

Tissue Transglutaminase (ttg) is actually an enzyme contained in your body that cross links with the gluten proteins in wheat, rye and barley stimulating the immune system to respond with B Cells (White Blood Cells) to produce the Anti transglutaminase antibodies IgA and IgG to go on the attack.

 

I'm reading your results as the normal range is 1 - 10 and the equivocal range (antibodies are present but not enough to confirm celiac disease causing an inconclusive test result) is 7 - 10.  Anything above 10 would be confirmation of celiac disease or not responding to the diet.

 

Kind regards,

Kamma

[designerstubble]

Thanks Kamma! Sorry, only just seen this, been a manic month, not been able to get my fix on these forums!