Latest bloods ,EMA neg but TTG borderline ?

[manaja1]

Hi everyone , I was diagnosed with Celiac a few years ago with biopsy and blood tests. I have my latest test results ,IGA EMA is 2.24u/l negative (<5.0) and IGG TTG 18.1u/l ,(<20 pos) my doc says the TTG is borderline but EMA is negative so not active Celiac ? I'm a bit confused,can anyone shed some light , still antibodies present , many thanks

[Gemini]

On 8/8/2020 at 8:50 AM, manaja1 said:

Hi everyone , I was diagnosed with Celiac a few years ago with biopsy and blood tests. I have my latest test results ,IGA EMA is 2.24u/l negative (<5.0) and IGG TTG 18.1u/l ,(<20 pos) my doc says the TTG is borderline but EMA is negative so not active Celiac ? I'm a bit confused,can anyone shed some light , still antibodies present , many thanks

The fact that your blood work has normalized is a good thing.  You are doing a pretty good job with the diet, if these tests were a lot higher when diagnosed. Are these the only two tests your doctor ran?  They are a part of a panel of tests and having the whole panel done is more helpful.

As far as tTg is concerned, getting it to the normal range is very good.  Ideally, it should be in the low normal of the range given by the Lab.  So, although it is normal, better to have it in the lower end of normal.  But that does not mean you are not healing.  Sometimes, another autoimmune issue that you may have, can elevate the tTg a bit.  Hashi’s thyroid disease is one of them.  My tTg stayed like that for awhile.  It was not positive but was in the upper end of the range.  But I have Hashi’s, which can be affected by undiagnosed Celiac. After some more healing time, I got it into the low normal range. So, a higher than you would like tTg, may not be from Celiac.  You have to keep your eye out for other AI diseases, once you have one of them. 

I do not know what doctors mean by “not active Celiac”.  Once you have Celiac, it is always there.  What you do with the diet is tame your immune system down so it is not so over-reactive.  Once you do that, the inflammation goes down in your body and your antibody levels lower.  You have tamed the beast but it doesn’t take much to anger it again.

Repeating the antibody testing is not supposed to be used for monitoring the diet or gauging healing but I don’t agree.  If you had positive blood work at diagnosis, then if they lower to good numbers, that gives you some useful information on how well you managing your diet......most of the time.  One of the tests in the panel, called the DGP, is the one for gluten consumption in the diet.  If they had run that, you might be able to tell if that higher range tTg might be from ingesting gluten.  I should add that your antibody levels will never be zero.  They do not need to be.  Lower end of the range is good enough for tTg testing.  It is the DGP that they like to see as low as you can get, as it pertains to what you are eating. When you get them low, your body is healing.  Unless you are still having symptoms, that is the best you can do with testing.

I would say, for now, continue with your diet and see what the next testing shows.  Maybe they can do a full panel?  Are you feeling better and have symptoms resolved?  I have no idea what your original testing was at diagnosis but these look pretty good.  You got them to normal, with a little more work on the tTg.  🙂

 

[manaja1]

Many thanks for the reply. 

I'm still awaiting other blood tests, so I only have a couple more which have come through , serum adjusted  calcium 2.49 ,Vit D 58 and Vit B12, 550, these are apparently in range.

    My symptoms have pretty much resolved , I did have a lot of stomach problems , loose stools , bloating , cramping , but one thing that did really frighten me is one morning in 2015, I woke up ravishing , I ate 2 full cooked breakfasts then within half an hour of so went to the sandwich shop for 2 sandwiches, my mrs said I needed to get to the doctors(I'd been plenty of times before , but they just treated me for ibs) , I was so hungry and felt empty still. They did a blood test for Celiac then the biopsy, so been gluten free since then. Ive not managed to put any weight on , but during the lockdown I went from 11stone 3 to 11stone 7 in a month , but once back at work lost it again.

[Gemini]

5 hours ago, manaja1 said:

Many thanks for the reply. 

I'm still awaiting other blood tests, so I only have a couple more which have come through , serum adjusted  calcium 2.49 ,Vit D 58 and Vit B12, 550, these are apparently in range.

    My symptoms have pretty much resolved , I did have a lot of stomach problems , loose stools , bloating , cramping , but one thing that did really frighten me is one morning in 2015, I woke up ravishing , I ate 2 full cooked breakfasts then within half an hour of so went to the sandwich shop for 2 sandwiches, my mrs said I needed to get to the doctors(I'd been plenty of times before , but they just treated me for ibs) , I was so hungry and felt empty still. They did a blood test for Celiac then the biopsy, so been gluten free since then. Ive not managed to put any weight on , but during the lockdown I went from 11stone 3 to 11stone 7 in a month , but once back at work lost it again.

You may want to ask your doctor to screen you for thyroid disease.  Particularly Graves’ disease or hyper-thyroid.  That can cause the hunger and trouble with gaining weight.  Thyroid disease is very common with people who have Celiac.  In fact, they should screen you for a variety of other autoimmune diseases but sometimes you have to fight to get that done. That might account for your high normal tTg test.

 I understand what you are saying as I have Hashi’s thyroid disease, which is the opposite of Graves......underactive. But while trying to figure new doses on thyroid hormone for me after being gluten free for awhile, I swung hyper and had symptoms like the ones you describe.  That can happen once healed from Celiac as the dose I had been taking was too large.  I lost 10 pounds in one week and was so hungry all the time.  Ha, Ha, my cat has hyper-thyroid now and she eats like a small horse!  Weights all of 6 pounds.

Your vitamin D looks good, though.  Not bad for a Celiac.  Same with vitamin B-12 but honestly?  Both can go higher as there is a difference between “being in range” and “optimal” ranges.  But what you have right now is pretty good for a recovering Celiac.  Your calcium is measured differently than here in the US, so I cannot comment on that. If they tell you it is in range, then that is good.

If you are having trouble gaining weight, and you are hungry all the time, then get screened for thyroid disease.  It is blood work so there should be no excuses from the doctor.  Things have gotten really screwed up with medical since Covid made it’s ugly appearance so trying to get doctors to do what needs to be done isn’t always easy.  They should do a FULL PANEL on thyroid testing also, not just cherry pick the tests.

Let us know how things go and good luck!