Gluten-Free not Working for Celiac Disease? You're Not Alone

If you continue to suffer from diagnosed celiac disease while following a strict gluten-free (GF) diet, you're not alone.  Recent studies, found that 34% to 92% of adults do not show mucosal recovery on a GF diet. In other words, the intestines of many celiac sufferers do not heal while on a GF diet.  Although they may feel better on a GF diet, how much better?  Their intestines show that symptoms still exist. Far from being small or obscure, these studies range from 158 to 465 people and have been published in respected journals.  The Mayo conducted the first study listed, with 381 people.

# Subjects Year Title
(Journal)
Note
n=381 2010 Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet
(Am J Gastroenterol 2010; 105:1412–1420; doi:10.1038/ajg.2010.10; published online 9 February 2010)
Mucosal recovery was absent in a substantial portion [34%] of adults with CD years after diagnosis (Kaplan–Meier 2-year and 5-year mucosal recovery rates of 34% and 66%, respectively). The median time to confirm mucosal recovery was 3.8 years. (Mayo clinic)
n=249 2007 Coeliac disease: a histological follow-up study
(Histopathology. 2007 Mar;50(4):465- 71. Bardella MT, Velio P, etc)
All patients showed an improvement in mucosal findings after starting a GFD, but complete histological normalization was observed in 74.1% of paediatric cases (diagnosed before 14 years of age) and in only 17.5% of adults.
n=158 2002 Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery
(Am J Clin Pathol. 2002 Sep;118(3):459- 63.)
Histologic recovery in celiac disease after starting a gluten-free diet takes time and is incomplete or absent in a substantial subgroup of patients (10.1% villous atrophy after 5 years). [But 25.9% of recovered group classified as Marsh II. And 23.8% as Marsh I. Marsh II does not sense to classify as "recovered".] (10.1% + 23.8% = 33.9%)
n=465 2009 Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet.
(Aliment Pharmacol Ther. 2009 Jun 15;29(12):1299-308. Epub 2009 Mar 3.)
429 out of 465 [92.2%] cases classified as Marsh III: increasing lymphocytes, larger-than-normal crypts, villi shrinking/atrophying

The SCD, or specific carbohydrate diet, was originally a treatment used for celiac disease. If a GF diet is not helping you for celiac disease, definitely read up on the SCD, as well as some of the introductory protocols in the GAPS diet.

(Note: These studies were examined after talking to a decades-long celiac disease sufferer--a fully diagnosed celiac patient for whom a GF diet wasn't working. Despite top medical care, the celiac disease still led to many years of antibiotics, respiratory ailments, and a host of other issues. This person has now spent 4 healthy years on the SCD.)