Trying To Decide If Genetic Testing Is Worth It

[Roda]

I have read mixed points of view on the genetic testing for celiac. I understand that if you have the genetic markers it does not mean you will develop the disease, but what if you don't have any of the markers? I know it can't rule in celiac, but can it rule it out? I am not willing to pay out of pocket for myself for it, because it will not change my treatment or diagnosis, but was thinking about having it run on my oldest. I want to try a trial of gluten free because of him having so much problems with constipation until he was four, his allergies, and some behavior issues. (He is 8 now). I am meeting resistance from almost everyone on "trying the diet" from my husband, allergist/immunologist, and ped. The only one who was open minded was the nurse pract. at the peds office. I thought that if I had the genetic testing done on him to rule it out then I could let it rest. If it came back with markers, I may have a little more support in my trial of the diet. I would like to hear from other parents on their opionion on the genetic testing and what action you took as a result of it. Thanks.

[jmjsmomma]

Hi Roda,

We did the genetic testing with our 2 yo daughter. My 5 yo son was diagnosed with Celiac in Jan 09. We tested the other 4 family members...dh and I came back negative, as did my 4 yo son. My 2 yo was negative on the celiac panel but also showed IGA deficient, so we elected to do the genetic test to see if she had any markers. I am so happy we did it. It came back completely negative of any markers and her GI said the chances of her developing Celiac disease were practically impossible. That is good piece of mind for me and well worth the money. If we had the funds available, we would do the genetic testing on our 4 yo, but until we do we will just do the celiac panel every year at his check up unless he becomes symptomatic (his panel was picture perfect). Good luck in your decision and I hope that you get the answers and support that you need.

[sugarsue]

I have not done it yet but I've thought about it a lot. With my 2 girls who obviously need to be on the gluten-free diet, I go back and forth. If I could do genetic testing to rule out celiac, then I would at least know we are dealing with intolerance and not celiac. But if it came back with the marker, then I would be where I am now, not really knowing. If you can spend the money, I think it is a place to start and could give you some good information. But that is coming from someone who has not done it yet and still thinks about it!

[Amyleigh0007]

I am also thinking about having my toddler tested for the genes. She has been gluten free her entire life. My husband thinks we should start adding gluten to her diet but I am terrified. Our 9 year old has Celiac and we went through hell with him before his dx. If she has the genes that will be a good reason to keep her gluten free. If she doesn't then I won't have to worry about it.

[sugarsue]

I am also thinking about having my toddler tested for the genes. She has been gluten free her entire life. My husband thinks we should start adding gluten to her diet but I am terrified. Our 9 year old has Celiac and we went through hell with him before his dx. If she has the genes that will be a good reason to keep her gluten free. If she doesn't then I won't have to worry about it.

Curious, if non-celiac gluten intolerant, I guess you won't have the gene but still can't tolerate gluten right? That's why I'm thinking the test would help know if my dd has celiac but won't help solve her gluten issue so I get confused about whether to spend the money. I think in your case with a celiac son, I would test my other child. It would really help your peace of mind!

[Roda]

I have not done it yet but I've thought about it a lot. With my 2 girls who obviously need to be on the gluten-free diet, I go back and forth. If I could do genetic testing to rule out celiac, then I would at least know we are dealing with intolerance and not celiac. But if it came back with the marker, then I would be where I am now, not really knowing. If you can spend the money, I think it is a place to start and could give you some good information. But that is coming from someone who has not done it yet and still thinks about it!

I was just curious if you noticed any improvements in your daughters allergy symptoms? My son is allergic to dustmites, cockroaches, ragweed, hemp, lambsquarter, and a few more weeds that I can't recall at this time. He is very much acting like he did before his allergies were diagnosed and am either wondering if he has developed additional ones since, with the exception of the dust mites and cockroaches, it is not the time of year he should be reacting to the others. Today I sent him to school with his own lunch and snack. I am going to go ahead and give it a try for about a month. He already had plans for a pizza party on Sun. that I'm going to let him "cheat" but that is going to be it. (I'm sure someone out there is going to cringe at that! ) I am going to go out today and pick him up a few things that are gluten free versions of the things he likes. The school sends out a memo of what they are serving. I circled the things that I knew or felt was safe that he could buy if he wanted to. I also notified his teacher of what I was doing and she did not have any problem. She has made a few more comments to me that he has been acting out more and seemes absent minded. She felt that this was out of character for him. Oh the joys!

I have no idea how much the test will cost. I was going to go through the lab at work. It will be a send off to ARUP if they can do it. I thought I would go this route just in case the insurance pays for it. If not, well I'm prepared. My youngest son at 14 months was tested for LAD (leukocyte adhesion deficiency) and Mayo in Rochester, MN was only one of two labs at the time that performed that test. It was a genetic test and I still have not recieved a bill and he is four now. Thank goodness he did not have that.

[Mommy2Many]

The genetis markers are seen in the Celiac Plus panel. It's just bloodwork. Since you already know that you have it and it can run in familys I would get the blood work done. I wouldn't put him through the biopsy though. I think this would be the best thing for everyone in your family. You would know for sure and it would put all the worries to rest.

[sugarsue]

I was just curious if you noticed any improvements in your daughters allergy symptoms? My son is allergic to dustmites, cockroaches, ragweed, hemp, lambsquarter, and a few more weeds that I can't recall at this time.

Oh interesting question that I have not thought about yet but now I will It does seem, now that I am thinking about it, that her other "seasonal" type allergies are not too bad right now (they are starting now). She is so allergic to dustmites and the low humidity levels have kept them at bay I think and they probably haven't gotten bad here yet.

I hope he has fun at his party with his last gluten blow out. I did that with my kids too

[Amyleigh0007]

Curious, if non-celiac gluten intolerant, I guess you won't have the gene but still can't tolerate gluten right? That's why I'm thinking the test would help know if my dd has celiac but won't help solve her gluten issue so I get confused about whether to spend the money. I think in your case with a celiac son, I would test my other child. It would really help your peace of mind!

I do believe my negative bloodtests were false. If we decide to do gene testing with my daughter I will get tested too, just out of curiosity. You are right about gluten intolerance. It is a sticky situation when there are no blood tests. The only way to know for sure is a diet trial. If we decide to do it we will go through Enterolab. Our insurance will not cover a gene blood test for Celiac. Enterolab is a cheek swab (much easier on a toddler) and the price isn't too terrible.

[Roda]

The genetis markers are seen in the Celiac Plus panel. It's just bloodwork. Since you already know that you have it and it can run in familys I would get the blood work done. I wouldn't put him through the biopsy though. I think this would be the best thing for everyone in your family. You would know for sure and it would put all the worries to rest.

The doctor wrote an order last November for a celiac pannel for both of my boys. I took them in to work and had their blood drawn. I figured since he ordered a "celiac pannel" we would have gotten the gliadin antibody test, total iga, and ttg at least. The only two things that the lab performed was the total iga and the iga ttg. So they did not get the complete pannel. The lab said that was what thier pannel was. His doctor also said that the antigliadin antibodies were not very accurate anyway and they can be elevated due to other things. Does anyone else follow this thought? I do know that it is now accepted as a general screening to do the total iga and ttg. So that may be why. The older boy's ttg was 2 and the youngest boy's was 1. I believe negative was anything under 20.