Looks Like I Have A Gluten Free Child

[Roda]

I took my almost 6 year old back to the allergist today because his symptoms have not improved since he had his allergy testing. Just a recap I had my son restested for allergies Nov. 3rd. He has been tested twice before and current and past have all been negative. He has had continued rhinosinusitis since an infant. He had reflux, RAD and constant infections also. He had a honeymoon period but all his sinus symptoms came back raging. He also has been complaining of random stomach aches since June and occasional "puke burps". I have been suspecting food is causing his problems. I got his results of his recent blood work today.

IgA Total, Serum 147.85 (ref range 30-210 mg/dl)

Tissue Transglutiminase IgA Ab 16 (ref range Normal < or = 15 u/ml, Positive > 15 u/ml)

Gliadin IgG antibodies 6 (same ref range as tTg)

Gliadin IgA Antibodies 7 (same ref range as tTg)

Also it noted at bottom: No reference ranges established for pediatric population

He had the Tissue Transglutiminase IgA Ab in Nov. 2008 after I was diagnosed and his result was 1 with a ref. range anything > 19 positive. So a definate change. Is it comon to have a positive TtG and "negative" gliadin ab?

Everything else that he was tested for was all normal. I knew someting was up before I knew of the positive result because the NP kept asking me about any GI symptoms. He took a look at his throat, nose and swollen nodes in his neck and said that he feels that he is having reflux causing the sinus issues. Makes sense to me. We are going to put him on zantac (low dose) for 2-4 weeks and I am starting him on a gluten free diet tommorow for at least a three month trial. I'm not going to take him to a gi specialist at this point since we are not going to do the EGD and biopsy. I think with his symptoms, his positive test and my history of celiac it is enough to put him gluten free. I had the NP write a note for school for me and I plan to write a letter to his teacher tonight. I am going to pack his lunch and send his own snacks. I'll send a list and have a box in the room for him. I have to be extra careful and make sure his stuff is nut free since there are other kids in his class with nut allergies. My husband is thinking this is going to be difficult for us. I told him if we are positve about it and don't make a big deal out of it neither will he. I am also going Monday to have my oldest boy retested since he will probably be gluten free by default. My youngest son is very much into "things need to be fair" so it would cause a lot less problems. I think he will benefit anyway.

[tarnalberry]

Good luck! I know that dairy is another MAJOR contributor to reflux, so if he's still on that, you may want to think about if you want to try taking him off of it.

[Roda]

Good luck! I know that dairy is another MAJOR contributor to reflux, so if he's still on that, you may want to think about if you want to try taking him off of it.

Thanks. His daddy was pretty upset by all of this. I think dad wasn't prepared for anyone else to have to be gluten free. It's different for him to eat his gluten stuff in front of me since I don't care, but he knows he will not be able to so much with him now. Also the boys have a boys day out every other weekend when I am working. They usually go for pizza or other things that I can't have. So I think he is a little sad too. I wrote his teacher a note, printed off some information and plan to talk to her in person. I know dairy can cause sinus issues as well. I am going to eliminate just the gluten for now and see if there are any changes. I'm not going to eliminate dairy just yet but may have to eventually.

[Roda]

Man I hate it when I sit and have to much time to think. I just hope I am making the right decision to go gluten free without the biopsy. I wanted it for myself, but it's weird I don't for him and neither does my husband.

[Skylark]

Any way you can get either of the better blood tests before you take him off gluten? Your doctor ordered the less accurate tests. The ones to ask for are deamidated gliadin peptide IgG and anti-endomysial IgA. If either of those is positive, you have a much better case for celiac without the biopsy.

[Roda]

Any way you can get either of the better blood tests before you take him off gluten? Your doctor ordered the less accurate tests. The ones to ask for are deamidated gliadin peptide IgG and anti-endomysial IgA. If either of those is positive, you have a much better case for celiac without the biopsy.

All the labs around here won't or don't do the EMA test. I don't know why or understand. I had an order for my oldest for the EMA along with the other tests and the lab wouldn't do it. I can inquire about the deaminated gliadin and EMA on Mon (and possibly get it drawn) however I started him gluten free today and Dad is being supportive. I wonder if 4 days gluten free would make a difference? I don't want him getting confused by flip flopping. Is the deamidated gliadin peptide just an IgG test or is there an IgA also? I have already talked to the school and explained the situation and they are having me fill out some papers and need one signed by the NP. I think the school will accomadate him. I really feel that this is his problem and I hate that I am second guessing my decision. I also already took him shopping for his gluten free box to keep at school.

[Skylark]

The deamidated gliadin peptide (DGP) is both IgA and IgG but most of the research I've seen uses the IgG version for everyone. Anti-endomysial is a specialized test that is done by hand, so not all labs offer it, but the DGP is amenable to normal ELISA equipment. Four days shouldn't make a difference, but after couple weeks he might start to lose antibodies. I don't really know the time frame and it's probably different for everyone.

Don't be hard on yourself for second-guessing. Putting a child on a restrictive diet is a big deal. It makes him different from his peers and it gets really hard on field trips, birthday parties, school events, and around holidays. I was wheat and dairy-free as a young child and Mom was supportive and wonderful but it was still really hard.

[Roda]

One year update: My youngest son has had such major improvent over this last year. Symptoms he had starting 6 months prior to going gluen free: extreme moodiness, "puke burps"(reflux), stomach aches, out of the ordinary obcessive behavior over shoes, temper tamtrums and occasional steatorrhea. All of these symtoms have gone away and only resurface if he is glutened by accident. We did do a gluten challenge after he was appx. 4.5 months gluten free. We ended it after three days because he was reacting so bad. Anyway, he has grown leaps and bounds, he has grown about 4" and gained around 8-10 lbs since last November. I think that is significant! I had his blood work repeated and here are the results:

IgA, serum 120.46 (ref range 30-210 ml/dl)

Deaminated Gliadin IgG Antibodies 2 (ref range 0-19 units)

Deaminated Gliadin IgA Antibodies 3 (ref range 0-19 units)

Tissue Transglutaminase IgA Ab 2 (ref range 0-15 U/ml Normal < or = 15, positive > 15)

The lab didn't do the DGP last year but they must have finaly replace the older tests with them now. Doesn't really matter because the only test positive then was the tTG. We now have a NEGATIVE tTG!! The last year has been trying at times for him but seeing the negative test and all the other improvements, has made it completley worth it!!

[Skylark]

Thanks for sharing the good news!