Testing On 3 Year Old; Negative But Gluten Free

[Familytradition]

So I took my son (3 yo) into the doctor's office 2 weeks ago today. I explained my concerns and the doctor decided to order this test:

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Test Includes:

IgA and IgG antibodies to deamidated gliadin peptide and tissue transglutaminase (tTG/DGP screen), IgG antibodies to gliadin (AGA), wheat allergen-specific IgE (wheat IgE). Profile starts with tTG/DGP screen test. If positive, testing stops. If negative, testing reflexes to the AGA test. If positive, testing stops. If negative, it reflexes to the wheat IgE test.

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Well I informed the doctor of my gluten intolerance/possible celiac (have celiac gene) and that we have been gluten free for 8 months now. He was still convinced that we should run this test and that it 'should' still pick up as positive if he really is gluten sensitive. (I tried to tell him that you have to be eating gluten for it to be showing antibodies to no avail.) My son is only three and has had limited gluten in those short years to begin with. Still the doctor insisted on testing him.

Well we finally (2 weeks later) got the results and SURPRISE they all came back NEGATIVE. I once again said that I wasn't surprised since the limitations listed with the test information plainly state that if you are on a gluten free diet, you may not get an accurate result.

So they offered to refer to us to whoever we needed/wanted to go to. But what would you do? I am not sure a GI is going to be much help since we are already gluten free and not willing to go on a gluten challenge at this point. This son also has autism and with this has language difficulties. Since restricting his diet, I have seen a completely different little boy emerge (this is why I refuse to do a gluten challenge with him). I can't put him back in pain without a way to tell anyone what is wrong.

So does anyone have any input? I would really appreciate something.

[sa1937]

So they offered to refer to us to whoever we needed/wanted to go to. But what would you do? I am not sure a GI is going to be much help since we are already gluten free and not willing to go on a gluten challenge at this point. This son also has autism and with this has language difficulties. Since restricting his diet, I have seen a completely different little boy emerge (this is why I refuse to do a gluten challenge with him). I can't put him back in pain without a way to tell anyone what is wrong.

So does anyone have any input? I would really appreciate something.

I'd let your mommy instincts prevail and keep him on a gluten-free diet. No way would I purposely make my child sick just to satisfy a doctor's curiosity. You seem to know a lot more than your doctor.

Is your son having other problems that would make you want to get a referral to a GI?

[Familytradition]

I'd let your mommy instincts prevail and keep him on a gluten-free diet. No way would I purposely make my child sick just to satisfy a doctor's curiosity. You seem to know a lot more than your doctor.

Is your son having other problems that would make you want to get a referral to a GI?

The only problem I can see is that certain foods trigger him to have bulky, mushy stools, horrible mood (pain?), leg pains, restless sleep, etc. His 'issues' disappear when on a particular 'free' diet. I guess the only thing I would consider would be to let them order the Kimbell Genetic test on him to show that he at least has one of my genes for gluten sensitivity and/or celiac. It is very upsetting when you seem to know more than your doctor about certain things. I have a vested interest in this though since it is my son. To the doctor, he is probably just another patient.

[stanleymonkey]

I'dstill go see a gi if he asks him go put your son back on gluten, tell him what gluten does to your son.

[Takala]

Off gluten for months, but running tests for the antibodies = negative test results, (almost always, unless getting cross contaminated) duh !

Sounds like the doctor is more interested in making a $ buck than being accurate.

There is a lot of hostility to the concept of autistic children being sensitive to certain foods in some of the autism "we know it all" groups, which is rather bizarre, but you have to trace it back to where they are getting their funding from, and that's not very obvious at first.

Perhaps over- the - counter genetic testing, if the medical establishment you're dealing with insists on forcing your child back on gluten to do anything. BUT, there could also be just a plain, old fashioned intolerance/allergy to something in his diet that is common to gluten free foods, and you can try to figure that out on your own, as well. (soy, lactose, casein are the three biggies)

So far I get some system upset from stuff with flax oil, cashews, and millet, for example, and soy flour sits in my gut like a rock, so I have started avoiding gluten free baked items with it.

[Poppi]

I would just accept your results as a positive test for now. My 6 and 2 year olds are gluten free, in part because I needed a gluten free house to feel safe and in part because I was convinced that they had gluten issues. My family doctor refused to test them because I never had a full testing and therefore didn't have a problem as far as she was concerned so there was no grounds for testing my kids. She wanted me to do a full gluten challenge and test positive on a biopsy before she would consider a simple blood test for my children. No going to happen.

Since going gluten free my 2 year old has gained some weight and stopped eating dirt, drywall, ice and crayons... which is exactly what I was hoping would happen with her as I was convinced she was showing Pica symptoms as a result of a nutritional defecit.

My 6 year old became a different child. He is calmer, gentler, nicer and more able to concentrate. I was regularly asked to remove him from the school grounds last year because he would lose his temper and become violent and rage out of control and this year I haven't received one phone call. At our parent teacher conference his teacher said he needed to work on listening and following instructions but she was quite impressed that he would remove himself from situations when he was getting angry and compose himself.

As far as I am concerned those are definitive positive gluten intolerance tests. Sure, I don't know for sure if they are celiac but I don't have that information about myself either. Maybe there will be a reason in the future for us all to do a challenge and get tested but for now this is working for us.