Listen to Stephanie. Your doctor should also be doing a repeat DGP or the older AGA-IgA/IgG to see if she is reacting to gluten in her blood......repeating the tTg only is the incorrect way to monitor the diet. Doctors make this mistake ALL THE TIME and I have posted this information so many times on this forum, it makes my head spin. Yet, still I see poeple with clueless doctors who don't know how to re-test for compliance.
The tTg only checks for intestinal damage, which can be elevated from other AI diseases. Forget Refractory Sprue......she is too young to sustain that kind of damage to cause it.
The other tests I mentioned look for gluten reaction in the blood so if this is negative, then your daughter is not consuming gluten and most likely may have another AI disease brewing.
That may not be so bad because when people are young, other AI diseases may not have been brewing long enough to cause much damage and many times, symptoms can be reversed. If your daughter has been serious about the diet, then it is also unlikely she is being glutened by non-food items. Lets face it, how many people actually eat their make-up and shampoo to the point where they cannot lower their tTg? The only things she really needs to be vigilant about are hand and body lotion and lipstick/ anything that goes on the lips.
I think this point is seriously over blown. Do people really want to be eating shampoo on a regular basis? How can you not know you are eating shampoo? The taste alone would get you!
Have your daughter's thyroid checked, with a full thyroid panel, not just the TSH and a screening for diabetes. Also, sometimes your liver enzymes can be elevated from Celiac Disease and liver disease can elevate tTg. This does not mean that your daughter has liver disease as liver enzymes usually always return to normal after following the gluten-free diet for awhile. I had elevated liver enzymes but not anymore. I also have 3 other AI diseases in addition to Celiac so I know a lot about this. All of my numbers have returned to stellar ranges
after awhile on the gluten-free diet. I am very sensitive to trace amounts of gluten and nearly died 8 years ago from the disease so if I can do this at my age, your daughter will be fine. it sometimes takes awhile to figure it all out and get on the right track.
Make sure the doc does the repeat DGP! That will give you some insight as to whether she is truly gluten-free. Not need to go crazy looking for holes in the diet when that might not be the reason for the elevated numbers. Good luck to you and hang in there......your daughter will be fine!
Well we have some results on daughter's latest tests.
In general things have shown some improvement, though some questions remain.
Here is the results:
Her ped. GI wants me to take her to her GP for a thorough physical, to see if they can find the reason for her general fatique, joint aches, headahes etc.
If GP doesn't come up with anything, ped. GI wants to look at an endoscopy and possible steroids to address the idea of Refractory Sprue!! I'm not willing to go there yet.
This is what I want to do and woud love any sage advice on this.
I have asked daughter to start journalling her aches and pains. Will take her in two weeks or so to her GP and discuss what the journal shows and ask the GP to do a full Thyroid panel.
If that shows us nothing....not sure what I will do next. She has no gastro symptoms...so I don't understand why the ped. GI keeps mentioning the refractory idea.
One other result of note is that her dad had a retest of his celiac panel and all results negative / normal
Would love to hear from you all to see if this seems like a reasonable approach...or any ideas of other things we should investigate.