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Ttg Concern
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8 posts in this topic

Hey

My son is a coeliac patient and was diagnosed April 2012 by a biopsy and i was informed he was a severe Coeliac due to his weight loss anemia and general apperence he wasnt right at all

Nov 2012 he had his 6 month bloods done and i was shocked at his results :

April : TTG >300

November: TTG >300

But he has gained weight and grown in height .... but is still anemieac at lvl of 7

My concern is that ok i may of risked him with the chip shop takeaways due to lack of info etc CC. but since then i have stopped this..

IS IT POSSIBLE FOR HIS TTG LEVELS TO BE SO HIGH THAT THEY ONLY DROPPED TO >300 ( Maximum testing level)

??????????????

In my belief i thought we were following a strict diet and since have changed our ways but could my question be possible as his levels are causing concern and issues regards to my management of his diet and no one believeing me i have been follwoing his diet

i will mention his diet wasnt 100% as we had a few accidents other the 6 months but since i have stopped all gluten food around my oldest son as my youngest was tested and he was negative .... strange i must say

Could i please just get some re-assurance ???

Many thanks in advance

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A doctor should never use tTg on re-test for dietary compliance as other autoimmune diseases can elevate tTg levels. These can include liver disease, Hashimoto's thyroid disease, and a number of others. The correct test to use for dietary compliance is the AGA IgA/AGA IgG or the newer, more sensitive one, the DGP. Of course, you are not in the US so I am not sure what tests are used in other countries but it would be the ones testing for gliadin antibodies in the blood.

I am like your son....I had classic Celiac and weighed around 95 pounds at time of diagnosis and was extremely anemic. You say he has grown in height and gained weight....is he still suffering symptoms? If his symptoms have abated and his height and weight are improving, then I doubt his tTg is still that high from gluten ingestion alone becasue he wouldn't be gaining weight or growing. Don't panic about the anemia because that can take a while to resolve, even in children. Everyone makes mistakes in the beginning and you really need to tighten up his diet and make sure he is not being cc'd BUT I suspect he may have another autoimmune problems, with a tTg that high. I have 4 autoimmune diseases so I know the drill. :(

I would highly suggest he have a full Celiac panel done and that he be screened for other AI diseases. Most of the testing, if not all, would be blood work. It took me a while to bring my tTg down into the low normal range after diagnosis because of all the other problems I had. Doctors annoy the hell out of me...they make this mistake all the time and then blame the patient by making them feel they are not compliant.

Take a deep breath and then ask for more complete testing! :)

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A doctor should never use tTg on re-test for dietary compliance as other autoimmune diseases can elevate tTg levels. These can include liver disease, Hashimoto's thyroid disease, and a number of others. The correct test to use for dietary compliance is the AGA IgA/AGA IgG or the newer, more sensitive one, the DGP. Of course, you are not in the US so I am not sure what tests are used in other countries but it would be the ones testing for gliadin antibodies in the blood.

I am like your son....I had classic Celiac and weighed around 95 pounds at time of diagnosis and was extremely anemic. You say he has grown in height and gained weight....is he still suffering symptoms? If his symptoms have abated and his height and weight are improving, then I doubt his tTg is still that high from gluten ingestion alone becasue he wouldn't be gaining weight or growing. Don't panic about the anemia because that can take a while to resolve, even in children. Everyone makes mistakes in the beginning and you really need to tighten up his diet and make sure he is not being cc'd BUT I suspect he may have another autoimmune problems, with a tTg that high. I have 4 autoimmune diseases so I know the drill. :(

I would highly suggest he have a full Celiac panel done and that he be screened for other AI diseases. Most of the testing, if not all, would be blood work. It took me a while to bring my tTg down into the low normal range after diagnosis because of all the other problems I had. Doctors annoy the hell out of me...they make this mistake all the time and then blame the patient by making them feel they are not compliant.

Take a deep breath and then ask for more complete testing! :)

Hey thanks for the reply could i ask what tests / diseases i shud ask to do as would be handy to ask them do it as i am not sure which tests they did other then his ttg and his anemia others where there but i had no understanding and not sure what lvls etc they where. he has another blood test in april and i am hoping it has came down as i am being watched at a very close eye and assumed im just posioning my son with gluten but since the xmas holidays his bowel movements have been normal so im doing food diarys and when he goes bk to school if his bowels change i shall be very concerned as the school are saying theyr following a strict diet sure find out when he starts eating there again

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Hey thanks for the reply could i ask what tests / diseases i shud ask to do as would be handy to ask them do it as i am not sure which tests they did other then his ttg and his anemia others where there but i had no understanding and not sure what lvls etc they where. he has another blood test in april and i am hoping it has came down as i am being watched at a very close eye and assumed im just posioning my son with gluten but since the xmas holidays his bowel movements have been normal so im doing food diarys and when he goes bk to school if his bowels change i shall be very concerned as the school are saying theyr following a strict diet sure find out when he starts eating there again

I would start with a full Celiac panel for re-test and they usually give people a hard time about that. It can be hard to accomplish here in the States unless you really press docs about it. They think that doing one or two tests from the panel are enough....not so. You need a full panel because each test is checking for different things and knowing which ones are negative or positive gives a clearer picture of what is going on. So ask for that.

Then have your son's thyroid checked for thyroid disease...again, a full panel. This is very important.

Testing for Type 1 diabetes. This can also raise tTg levels. I want to add that please, please do not worry that your son may have these diseases because he is young and probably doesn't BUT as they can raise tTg levels, besides Celiac Disease, and his tTg is still very elevated, it would be wise to rule these out.

Check to see if his liver enzymes are elevated as many Celiacs have this happen but it usually normalizes and goes back to normal range once a gluten-free diet is started and is stuck too.....strictly. It happened to me. Mine are fine now.

Sometimes it can take a long while for tTg to normalize and everyone makes mistakes in the beginning so do not go around and beat yourself up thinking you are "poisoning" your son. It is a learning process and sometimes very hard to believe that small hits of cc can still raise levels and keep healing from happening 100%. Your son is young and he will heal but be patient....it can take a few years time for it all to settle down.

I would suggest getting copies of his testing and if you feel comfortable doing so, post his results here and we can help you understand the results.

We have the time that doctors do not to explain everything and most doctors do not know as much as the collective on this forum do! So relax.....you will learn

the diet and all the stuff you need to do to get your son back on track. You have some good companies in the UK that cater to Celiacs, like Genius bread. It is easier to have this disease now than it was 5 years ago!

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I wanted to add something I thought of after re-reading your original post.....both of his blood tests just show results as being greater than 300. This is a lousy and inaccurate way to do blood work as they need to give a definitive number. His original testing could have been 600 or higher, and then on re-test in November, it could have dropped but still been over the 300 that is referenced on the test. So how would you know whether it had dropped or not? You don't! Unless they gave a number to compare to and you haven't posted it, this proves nothing. I would go by his weight gain and growth as proof that he is getting better.

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Just going to point out something, Celiac is the main cause of ttg elevation. If you have other symptoms that aline with other conditions (thyroid, chrones, and diabities come to mind), then it can point into that direction if celiac is ruled out.

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The correct test to use for dietary compliance is the AGA IgA/AGA IgG or the newer, more sensitive one, the DGP. Of course, you are not in the US so I am not sure what tests are used in other countries but it would be the ones testing for gliadin antibodies in the blood.

Gemini, can you share some details? I have not found any published research of any test that is effective for testing compliance with a GFD. Such a test would be a huge step forward, since many people continue to have symptoms even after going on a GFD: nutritional counseling can help, but an actual diagnostic would be great.

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Gemini, can you share some details? I have not found any published research of any test that is effective for testing compliance with a GFD. Such a test would be a huge step forward, since many people continue to have symptoms even after going on a GFD: nutritional counseling can help, but an actual diagnostic would be great.

I'm not sure if you need to check published research on testing for compliance. The tests routinely run by any doctor treating people with Celiac Disease and the ones I have run every once in awhile are the AGA IgA and AGA IgG, which are the older tests. The newer one, the DGP, is the same but newer and more sensitive. These check for antibodies in the blood which will tell you if you are ingesting gluten.

Many people that still have trouble after starting the diet may not be healed yet or have other allergies or sensitivities. This is very common.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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