How Long For Villi To Recover?

[RoseRobin]

My son received negative results to his blood tests, but we are still unclear about whether or not he could be celiac, as he had tried going gluten free for several months and then went back on gluten for only two weeks before the test. I'm wondering if we should try to get an intestinal biopsy done--or would that be pointless now that he has been back on a gluten-free diet for two weeks already? If damage has occurred to the villi but one then goes gluten-free, how soon might the damage be repaired and therefore be unobservable through a biopsy?

[Rebecca's mom]

If damage has occurred to the villi but one then goes gluten-free, how soon might the damage be repaired and therefore be unobservable through a biopsy?

It would really depend on how much damage might have been there to begin with. Our youngest daughter was diagnosed a year ago with both gliadin and tTG numbers >100 (pretty high for a 7-year-old). At her last check-up a couple of weeks ago, her tTG was 6 (<5 is negative for villi damage).

Generally, the higher the tTG number, the longer it will take for the villi to recover. However, I believe I read somewhere recently that there can still be some degree of intestinal damage in people who have been diagnosed with celiac disease, even with a "normal" tTG number.

You may want to have a genetic test run - most doctors' offices can order this; you don't need to have an independent lab run it. The name of the test that you want to ask for is HLA Typing for Celiac Disease. That will tell you if your son carries one of the genes which are currently known to be associated with 96% of celiac disease cases.

Just be aware, however, that 40% of the US population carries one or both of these genes, so a positive genetic test DOES NOT mean that a person has celiac disease, just that they are at a higher risk of one day developing it. No one is really sure what triggers celiac disease to activate in some people and not in others. If a person carries one of those genes, they are probably more likely to have some level of gluten sensitivity, and may find a GFD to be beneficial.

It is possible that your son is Non-Celiac Gluten Sensitive (NCGS) - that is, he responds favorably to a GFD, yet won't test positive for celiac disease. Many celiac disease researchers are starting to acknowledge that this is a much larger group of people than originally thought. Hopefully they will be able to develop a test (other than a trial GFD) which will be able to detect this sometime in the future. What they do know is that celiac disease is the most extreme "form" of gluten sensitivity - the tip of the gluten "iceberg", if you will.

If your son does well on a GFD, you may just want to "label" him NCGS and go merrily along your way - my husband and one of our other daughters are feeling MUCH better on a GFD, and neither one of them carries one of the two main celiac disease genes (they do, however, carry one of the genes seen in most of the 4% of Celiac patients who don't have either gene.......). They both had positive tTG results on a stool test, but not on their bloodwork.

That (plus feeling better) was enough to convince my DH to continue on a GFD - he embarked on it under protest, but he immediately started to see improvements in his health. He is now fully committed to following a GFD, and even tells friends and coworkers how beneficial it has been for him! And believe me, we (the whole family) are the FARTHEST thing from health nuts that you could find........

I hope you are able to find some answers. The best advice that I can give you is to trust your instincts - if a GFD is giving you good results, then just continue with it, regardless of your son's test results. It certainly won't hurt anything - there are no known adverse side effects to this diet!

[latteda]

Can a PCP do a HLA Typing?