I Need Some Honest Opinions

[aidansmom]

My 2 yr old was diagnosed 1 year ago. At that time, his AGA IgA and AGA IgG were elevated. TTG and ARA were negative. His quantitative IgA is normal. His biopsy showed mild shorted villi. His blood work improved after 2 months. And his symptoms improved on a gluten-free diet for 9-10 monthts until 2.5 months ago when I weaned him. (I had also been gluten-free). Now he has 3-6 mushy/diarrhea stools and lost .5 lb. We did not notice any other dietary changes but the breastmilk.

We recently moved and our new doctor was going to do a TTG to see if my son was unknowingly getting gluten until he realized the TTG was never positive. He says this is the most reliable and doesn't make sense that it is negative. AND, he did the HLA test which was also negative. We go back to see him in 2 weeks but we are to go ahead and reintroduce gluten now.

Any opinions would be great? Anyone here diagnosed with a negative EMA and/or TTG? Why would the AGA IgG and IgA be elevated if he weren't celiac?

Thanks so much. We are just so confused.

[lovegrov]

I had elevated ttg but I've seen any number of people on various forums who were diagnosed without that. I've seen some who had nothing but an elevated Igg (the least indicative of celiac) but whose problems all resolved completely by doing nothing more than cutting out gluten.

It certainly sounds like gluten was causing problems before. Now that your son is no longer breastfeeding, perhaps he has a new allergy or sensitivity.

richard

[gf4life]

Also, the HLA test being negative only means that he doesn't have either of the two main genes that they know are connected to Celiac Disease. They have not done enough genetic studies to know if they have found ALL of the genes responsible for celiac disease. They only know that about 95%(or something like that, I can't recall they exact number) of people with biopsy diagnosed celiac disease has one or both of the HLA DQ2 & 8 genes. Dr. Fine at Enterolab has isolated two other genes that he has connected to gluten intolerance (HLA DQ1 & 3), and most genetics labs don't check for those yet when looking for celiac disease. In my family of 5 we have HLA DQ1,2 & 3 in a whole bunch of combinations. He might be one of the gluten intolerant people who doesn't have DQ2 or 8.

I would suspect dairy or another food that he has become sensitive to since weaning. Breastfeeding helps to protect the body quite a bit, and he could just be showing a reaction now to something else that is bothering him. Other food sensitivities can cause mushy stool/diarrhea, and a .5lb loss of weight is not really uncommon when newly weaned children are getting used to having to "eat" all their food, rather than drink it.

If you do decide to put him back on gluten, I would highly suggest charting his symptoms, when and if they return. Then when you went back to the doctor you would be able to give him a more clear picture of what is going on.

And as far as the antibody levels. I NEVER tested positive on any of the blood tests., but was never tested for IgA deficiency. My children only tested positive on the AMA IgG. All of us are gluten intolerant. All have serious health issues when we consume gluten (and dairy). None of us have a diagnosis of Celiac, but we will remain gluten free anyhow. Our health depends on it.

God bless,

Mariann