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More Help With Test Results

happymom

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happymom Rookie
happymom
Posted

My baby had a celiac panel done which came up positive with a score of 83.7 with normal range of 0-23. The doctor then sent for tranglutaminase IgA which came back with a score of 0.20 with a normal range of 0-7.19. Now he sent for transglutaminase SCR, and we're still waiting for results. What do these results mean? If the transglutaminase IgA is normal, does this mean that he has a good chance of not having celiac? What is tranglutaminase SCR? Which of these tests hold more weight in diagnosing celiac?

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ravenwoodglass Mentor
ravenwoodglass
Posted

It looks like you little one is celiac. It would be a good idea to have everyone in the family tested. That first result is really high. No matter what the other test results are you should start him on the diet as soon as your done with testing.

beefree11 Newbie
beefree11
Posted

((((((happymom)))))

Hope everything works out for your child and for your family.

happymom Rookie
happymom
Posted
  • Author

It looks like you little one is celiac. It would be a good idea to have everyone in the family tested. That first result is really high. No matter what the other test results are you should start him on the diet as soon as your done with testing.

So it seems that our pediatrician disagrees with this. He says that if he would have celiac, he would have more than one positive result. We're still waiting on the tTg SCR but if that's negative, he says we will not need to do an endoscopy. He would just want us to repeat the blood work in a year. Does that sound right?

ravenwoodglass Mentor
ravenwoodglass
Posted

So it seems that our pediatrician disagrees with this. He says that if he would have celiac, he would have more than one positive result. We're still waiting on the tTg SCR but if that's negative, he says we will not need to do an endoscopy. He would just want us to repeat the blood work in a year. Does that sound right?

That only sounds right if he is having your little one go gluten free during that year. People can have celiac even with none of the blood tests being positive. I suffered greatly because I am one of those 20 to 30 percent who don't show up positive on the blood tests. I was tested over and over for years because I was a 'testbook' case and as my new GI stated I would have been one of the celiacs that he referred to as 'diagnosed by autopsy' as I was close to death by the time I was diagnosed.

With a positive blood test I hope you take him gluten free. You don't need the doctors permission to do so.

He actually has two positives "celiac panel done which came up positive with a score of 83.7 with normal range of 0-23. The doctor then sent for tranglutaminase IgA which came back with a score of 0.20 with a normal range of 0-7.19." even though the TTG is only one point into the positive range.

TPT Explorer
TPT
Posted

It would also be easier to control his diet and get him used to it at a younger age.

happymom Rookie
happymom
Posted
  • Author

Thanks for the replies. I guess I should clarify a few points.

The pediatrician does not want us to go gluten free during that year, as in his opinion he does not have celiac (unless the final result comes up positive as well). We aren't actually looking for a diagnosis. My baby has no symptoms of celiac. The only reason he was tested is because he is small for his age. He's my 8th baby and most of my kids are small so it's not terribly concerning that he is too. His siblings all tested negative for celiac and I strongly suspect that my little on is small because of genetics and nothing else. So is there still any reason to take him off gluten if only this one test is positive and he has no symptoms of celiac?

He actually has two positives "celiac panel done which came up positive with a score of 83.7 with normal range of 0-23. The doctor then sent for tranglutaminase IgA which came back with a score of 0.20 with a normal range of 0-7.19." even though the TTG is only one point into the positive range.

His tTg was actually well within normal limits. The normal range is 0 to 7.19. His is 0.20, so not positive at all.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the replies. I guess I should clarify a few points.

The pediatrician does not want us to go gluten free during that year, as in his opinion he does not have celiac (unless the final result comes up positive as well). We aren't actually looking for a diagnosis. My baby has no symptoms of celiac. The only reason he was tested is because he is small for his age. He's my 8th baby and most of my kids are small so it's not terribly concerning that he is too. His siblings all tested negative for celiac and I strongly suspect that my little on is small because of genetics and nothing else. So is there still any reason to take him off gluten if only this one test is positive and he has no symptoms of celiac?

His tTg was actually well within normal limits. The normal range is 0 to 7.19. His is 0.20, so not positive at all.

That his TTg was negative is good since that shows, if I am not mistaken, that so far his body is not attacking itself, yet. Children often have false negatives on testing and it is significant that he has tested positive, and it is not a low positive. It would be a good idea, IMHO to seek a second opinion from a doctor who is more knowledgeable about celiac. You should also get copies of the blood tests done on your other children as sometimes a doctor will call a low positive a negative, especially one that does not know much about celiac.

happymom Rookie
happymom
Posted
  • Author

That his TTg was negative is good since that shows, if I am not mistaken, that so far his body is not attacking itself, yet. Children often have false negatives on testing and it is significant that he has tested positive, and it is not a low positive. It would be a good idea, IMHO to seek a second opinion from a doctor who is more knowledgeable about celiac. You should also get copies of the blood tests done on your other children as sometimes a doctor will call a low positive a negative, especially one that does not know much about celiac.

Thanks a lot. The pediatrician just called to say that he discussed our case with the pediatric GI and that the GI wants to see him despite the negative tTg. So we have an appointment for next month. I don't know if she'll want to do an endoscopy or not, but I guess time will tell.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks a lot. The pediatrician just called to say that he discussed our case with the pediatric GI and that the GI wants to see him despite the negative tTg. So we have an appointment for next month. I don't know if she'll want to do an endoscopy or not, but I guess time will tell.

Glad to hear it. Do keep him on gluten until the day of the biopsy but as soon as the biopsy is done it would be a good idea to take him gluten free. You don't need to wait on the test results.

Roda Rising Star
Roda
Posted

My youngest son only had one test positive the ttg which is the test for the damage and I put him gluten free without the gi consult, but I'm diagnosed so the decision was easy for me. My oldest son's tests are negative but his allergist strongly feels that he is gluten intolerent and needs to be gluten free too(just got this info today). Just so you know even if your other kids tests are negative now doen't mean they can't be positive down the road. This is what happened with my youngest son. I agree with raven that if they don't give you a celiac diagnosis, at the very least he is gluten intolerent and treatment is the same.. gluten free. It very well be that your other kids are affected but just don't show the antibodies yet.

happymom Rookie
happymom
Posted
  • Author

We just got back his tTg SCR and it is well within normal limits as well. I'm really hopeful that this is another good sign that he does not have celiac. We'll be seeing the GI in a month and doing whatever she says, but based on what I've heard from others, I don't think she's going to put him through and endoscopy just because of that one positive result. More likely she'll tell me to continue on a regular diet and test him again in a year. Since he has no symptoms, this makes sense to me and I will do whatever she says. If she does decide to scope, I'll go ahead with that too.

mushroom Proficient
mushroom
Posted

You must believe us when we say that we are not trying to turn your child into a celiac because this is a celiac forum :) We are very happy if in fact people do not have celiac disease. We become very concerned that potential celiacs are misdiagnosed because of 1. lack of knowledge of the doctor; 2. conflicting test resultsl 3. parents who cling to a possibly false hope from a doctor who may or may not know a lot about celiac disease.

At the very least, I would think that all of your children should be watched carefully for any symptoms. If I were in your shoes I think I would have both yourself and your husband take the genetic test to see if you carry any of the genes associated with celiac disease/gluten intolerance, because if any of your children do have the disease they must have inherited it from one or both parents. This is not foolproof because there are genes associated with celiac other than those that are tested for, but it is a start.

There is another item that must be entered into the equation here. There are silent celiacs, who show no outward symptoms of the disease and may live a happy life, maybe even a fairly long life, before being struck down by an autoimmune disease caused by gluten intolerance. I am a prime example of that, developing psoriatic arthritis at age 63 - who would have known? I had some GI symptoms passed off as IBS and psychological problems (psychiatric referral was recommended) and never enough to stop me from living a fairly normal life. Unseen damage can be done by gluten that manifests itself later in life, and as so many of us say, I wish I had known better. That is all that we are trying to save your son from.

We have almost all consulted with doctors who have assured us that everything was just fine, that we were stressed, that we were hypochondriacs, that we had psychological problems, that we had "IBS", and we all believed them to our detriment.

So, not to undermine the medical community and profession, but as with anything in life these days, everything must be taken with the proverbial pinch of salt, and evaluated unemotionally and with a dispassionate eye. I believe that that is what the posters here are asking you to do.

beebs Enthusiast
beebs
Posted

Eeeppp! The false neg in children and babies is even far higher than the 20-30% in adults. My 17month olds bloods came back completely negative but our Paed GI did not care - he is still getting an endo, he places no weight in those blood test for babies.

happymom Rookie
happymom
Posted
  • Author

Thanks for sharing. I did actually start to get the feeling that anyone who comes to these forums will be diagnosed with celiac by the other posters for some reason or another. :) I appreciate your explanations. I will have to wait and see what the GI says. Genetic testing isn't something I can decide to do on my own, and in this socialized country, I don't think any doctor is going to just order it for me. We're really at the GI's mercy at this point--if she decides he needs and endoscopy, so be it. If not, there's little I can do about that. I would have a hard time convincing her to go against what she knows, since he really doesn't have symptoms of celiac to make her think that maybe he's an exception to whatever rule she's basing her decision on.

beebs Enthusiast
beebs
Posted

Thanks for sharing. I did actually start to get the feeling that anyone who comes to these forums will be diagnosed with celiac by the other posters for some reason or another. :) I appreciate your explanations. I will have to wait and see what the GI says. Genetic testing isn't something I can decide to do on my own, and in this socialized country, I don't think any doctor is going to just order it for me. We're really at the GI's mercy at this point--if she decides he needs and endoscopy, so be it. If not, there's little I can do about that. I would have a hard time convincing her to go against what she knows, since he really doesn't have symptoms of celiac to make her think that maybe he's an exception to whatever rule she's basing her decision on.

Honestly, we had a Paed who told me there was nothing "wrong" with my son who was 3 at the time and that he had "toddler diarrhea". He became so severely aneamic he developed a heart murmur - it was a very scary time, he could not stand up, he could not eat, he just lay crying on the couch for months, it was awful to watch. So basically we started seeing someone else (a paed GI with a brilliant reputation) who would take my sons symptoms seriously.

Sometimes you have to be your own advocate and you can't just trust a Dr because they are a Dr iykwim. There are great Drs out there and not so great Drs.

I don't think anyone on here is trying to "diagnose" your child - but maybe just get you to raise questions and not just accept the first answer you are given especially about celiac - there is a reason that on average it takes 11 years in the US to be diagnosed with celiac. The fact is most Drs don't know anything about celiac - Seriously - they have no idea. They had my mother convinced that she was dying of bowel cancer after 3 years of sickness and dropping about 100 pounds in weight - and it was Celiac. They told my friend that her 18 month old baby most likely had leukimia - and it was celiac. I know so many other stories in real life (not from forums) that I know how little Drs really know about it iykwim. So I choose to do my own research lot of research as do most of the people on this forum.

In my country only 20% of Celiacs are diagnosed -that means that 80% are wandering around eating gluten and doing major damage to themselves without even realising. Terrifying.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for sharing. I did actually start to get the feeling that anyone who comes to these forums will be diagnosed with celiac by the other posters for some reason or another. :) I appreciate your explanations. I will have to wait and see what the GI says. Genetic testing isn't something I can decide to do on my own, and in this socialized country, I don't think any doctor is going to just order it for me. We're really at the GI's mercy at this point--if she decides he needs and endoscopy, so be it. If not, there's little I can do about that. I would have a hard time convincing her to go against what she knows, since he really doesn't have symptoms of celiac to make her think that maybe he's an exception to whatever rule she's basing her decision on.

No one on the board is trying to diagnose your child with anything we are simply trying to give advice based on what you have posted. This "My baby had a celiac panel done which came up positive with a score of 83.7 with normal range of 0-23" does have some significance. Not all the tests need to be positive for a diagnosis to be given by a doctor knowledgeable about celiac. There is a reason this test score was so high. I hope you get some clear answers from the doctor and wish you and your son the best.

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