Thank you for the info. We are going to be testing everything this time, but now I am in the waiting game for the next 2 months. Just put him back on a "normal" diet (besides dairy) for the gluten challenge. Then she is running all kinds of blood work and likely doing an upper and lower GI a week later (as soon as the blood results are in). Can you give me some insight on what "other immune" problems could be causing the ttg -igg to be elevated? I have heard reasons for the ttg iga to be elevated but there doesn't seem to be much info out there on elevated ttg igg. Thanks in advance!
I am sorry you are going through all this as it is beyond frustrating. The more common associated conditions that can trip the IgA-tTg are thyroid disease, autoimmune liver disease, Crohn's Disease or Type 1 diabetes. This does not mean a person has them, as you know, but the possibility is there. You are also correct in that there is little out there with regards to IgG-tTg and what an elevated number may mean. However.......
Testing is such a crapshoot in a 2 year old as they do not have a mature immune system. This is why people go years before a diagnosis can be officially made because it can take years for enough damage to occur and for the immune system to mature to obtain a valid test. But you have some positives here. Your son's growth changed for the positive on the gluten-free diet. I know there is still a problem with loose stools but that can take awhile to go away completely AND there could be additional food issues that haven't been pinpointed yet.
My niece has a now 11 year old son who had Celiac related issues from birth. I was diagnosed with Celiac shortly after he was born. He was scoped at the age of 2 and the GI doc (who was an idiot as far as I am concerned) said no celiac. His duodenum was inflammed but of course, in a 2 year old, good luck finding damaged villi. So, he counseled against the gluten-free diet. Honestly,where do these people get their licenses to practice medicine?????? I am this child's blood related aunt and I nearly died from undiagnosed Celiac. His duodenum was inflammed and he counsels against the gluten-free diet as a trial? My niece, unfortunately, is one of those who believe whatever the guy in the white coat says so he was never placed on a gluten-free diet. This kid had severe muscle weakness in his neck and could not lift his head as an infant until much later than many because of it. He is so undersized, it is not funny...he is the same size as his 7 year old brother. He has since developed asthma and has developmental problems. So, he is now in the "honeymoon" phase of Celiac and some of his symptoms have receded from meds and the hormones that are starting to kick in. It drives me absolutely crazy to see this and still no gluten-free diet being tried and he is the size of a 7 year old. They think he is getting better because symptoms often go away during the teen years, only to return with a vengeance later in life....just like me. This poor kid is going to wake up one day with a multitude of AI problems and crappy health all because some arrogant GI couldn't find damaged villi when he was 2 years old and he didn't trip the blood test then. I don't even think they have retested him since and I just wanna scream, at times.
I think it a good thing you are doing what you can do to have your son tested but if everything comes back without clear answers, I would say put him back on a strict gluten-free/dairy free diet and see what happens. Four months is not very long to get any definitive answers, even in a 2 year old but the growth thing is saying something to you. Test away for now and let us know what the outcome is. Hang in there because sometimes, this takes longer than we like!