The Doctor Gluten Project

I have been asked by Rebecca: ”I have a 5-year-old daughter who consistently complained of sore tummies, has constipation, pale floating bowel motions, gets tired easily...to name a few.  She has had positive blood tests for Coeliacs Disease as well as a positive endomysial antibody test.  Her biopsy done in April was (luckily or not!) NEGATIVE.  We are at a crossroads.  There is no "clinical" reason to put her on a GF diet.  But obviously "something" is up with the consistent positive blood tests.  The surgeon says that our daughter is a "latent Coeliac" (which he says means she MAY get it at some stage).”

 “Can we prevent her getting it by going gluten free?  Or perhaps just going low gluten?  We are very frustrated and confused.  It would "almost" have been an easier decision if she had had a positive biopsy! "
Kind Regards, Rebecca.

I reply:

Many people are investigated for coeliac disease by endoscopy.  They have a “small bowel biopsy” to look for gut damage (called villous atrophy).  Most people with high tTG antibodies will have this gut damage (but not everyone).

If the biopsy is positive (Villous atrophy seen) – then this is confirmed coeliac disease.

NEGATIVE BIOPSY:
If the biopsy is negative, this does NOT exclude coeliac disease.

The coeliac disease might be developing and there is not yet enough damage to cause any recognizable villous atrophy.  Also the gut damage can be patchy – damaged bits might have been missed. The small bowel biopsy is not infallible.  It is a useful test, but needs to be evaluated in the clinical situation.

Get your HLA gluten markers measured (HLA - DQ2DQ8).

If you have early coeliac disease: abnormal blood tests, but a normal biopsy, I suggest that you go on a gluten-free diet and see how you feel.  If you are better , then stay gluten free.

The other option is to put up with the terrible symptoms for a few more years, repeat the blood tests, repeat the biopsy, and then go gluten-free in a few more years.  Why put up with being glutened?  Cheers, Dr Rodney Ford.

See a full discussion of this in the “BONUS CHAPTERS”.  To view these you need to register with a “logon”.  Then you can see a whole lot more information.