Ranges for TTG and trying to work out how I'm doing 7 months after dx?

[nellie237]

Hi,

I tested positive for Coeliac late last year. My Tissu transglutaminase IgA result was:-

43U/ml...........................Range 0.1 - 3.5 so, >10X the upper limit

Most of the posts I've seen re blood results are people asking about results of >100, or they've had a 'weak positive' but know that gluten is causing a problem, and I'm guessing that they've been tested on whatever kit Glos Hospitals use where U/ml :-

7-10......................................................Equivocal

11-50...................................................Weak Positive

51-100...............................................Moderate Positive

>100..................................................Strong Positive

Seven months on, I asked my GP to test again and the result is:- 1

which calculates to 26% through 'Normal' range, which I'm quite pleased with but don't have anything to compare it to. Should I be aiming for zero tTG, or is being within range OK? Any ideas?

[Researchfan]

Hi Nellie237 👋 .

I’m no expert on the number ranges but reckon that’s a fantastic reduction, well done! Your gut must be healing well. I’m guessing the lower in the range the better when it comes to it as a general guide!?

Best wishes to you 👍

[nellie237 in reply to Researchfan]

Hi Researchfan,

I know! I think my chin hit the floor when I saw the result last night, then the big, big smile.😃

I certainly feel better than I did 6 months ago. I'm still lacking energy, but I'm not on my knees anymore

I hope that you are well x

[Researchfan in reply to nellie237]

Hi Nellie237.Lol I love your sense of humour 😀 .

Doing ok thanks. Been wheat free gluten free again for a couple months. Paid for Thyroid blood test. Back within a good ‘normal range’. Making sure to get selenium iodine etc. I think B12 and vitamin c has helped energy a bit. Though I still need to eat more as lost the weight gained on the gluten challenge. Trying to stick to low histamine for dysmenorrhea.

Keep up the good work 😃 . Hopefully you’ll continue and regain more energy just takes time x

[Whydothis]

Just for comparison - my first result was >100, and it took me 2 years, and various changes to what I eat, to get it down to 8.1. I do hope to go much lower - time will tell whether it is possible. Now I am down to "normal", and all the other things they test me for are in normal range, my dietician says I can only have one blood test per year rather than the two I have been requesting up to now. I know someone else who had a negative test that came back as 1.5 on the same scale as mine, so I see that as something to aim for, but I might be being unrealistic! I certainly want to get below 7.

I have just looked back at my results, and after 8 months of being very careful I only got down to 28 - so in comparison to me you are doing very well.

[nellie237 in reply to Whydothis]

Thanks Whydothis,

That is very helpful and encouraging.

My daughter was tested at the same lab as me, her result was negative at 0.4.

I only really started taking an interest in my blood results after the Coeliac dx. I've been hypothyroid for about 13 years, and when I got on-line access I found that I'd been at the very bottom of the ranges for Ferritin, Folate & B12 for years and of course the coeliac tipped me over even more.

I took the high dose supplements prescribed by my GP for a couple of months, and I am now working with my GP to keep them in reasonable shape ie I buy the supplements.....they do the testing. At some point it will be annual testing only, so I'm trying to use this window to work out what I need for maintenance. I should have enough in my diet, and I'm hopeful that I won't need supplements at some point, but I don't know how much the underactive thyroid affects my absorption. I was also on PPI's for years which may have been responsible for the low levels. So many variables.............

I wish you the best of luck with getting your tTG under 7😊 you are so close.

[Whydothis in reply to nellie237]

You sound as though you are getting it all under control! It is annoying that they will tell you your results are ok when they are within the range, even if they are right at the bottom of the range. I am waiting for the NHS app to give me online access - I am at the "prove your identity" stage - it will be helpful to see the results without having to chase and ask several times for paper copies! I am really glad I asked for the copies though, as they tell me the range for everything, so I can judge for myself whether I need to tweak my diet to get more of any nutrient.

All the best with your continued progress.