Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study

Table 1 Demographic and clinical characteristics of patients at diagnosis, by country

	All patients (n = 300)	United Kingdom patients (n = 100)	United States patients (n = 100)	Norway patients (n = 100)
	n (%)	n (%)	n (%)	n (%)
Age at diagnosis1
mean (SD)	38.9 (17.2)	42.4 (16.9)	39.1 (14.6)	33.1 (18.6)
Median (IQR)	36 (25.0-50.0)	41 (29.0-55.5)	38.5 (26.5-49.0)	31 (21.0-46.0)
Sex
Male	84 (28.0)	29 (29.0)	24 (24.0)	31 (31.0)
Race/Ethnicity
White/Caucasian	287 (95.7)	94 (94.0)	96 (96.0)	97 (97.0)
Black/African-American/Caribbean	2 (0.7)	1 (1.0)	0 (0.0)	1 (1.0)
Hispanic/Latino	2 (0.7)	0 (0.0)	2 (2.0)	0 (0.0)
Asian	6 (2.0)	4 (4.0)	0 (0.0)	2 (2.0)
Other	1 (0.3)	1 (1.0)	0 (0.0)	0 (0.0)
Unknown	2 (0.7)	0 (0.0)	2 (2.0)	0 (0.0)
Confirmation of diagnosis
Biopsy and serology	272 (90.7)	99 (99.0)	91 (91.0)	82 (82.0)
Biopsy only	28 (9.3)	1 (1.0)	9 (9.0)	18 (18.0)
Reason for diagnosis2
Gastrointestinal symptoms	231 (77.0)	70 (70.0)	80 (80.0)	81 (81.0)
Extraintestinal manifestations3	91 (30.3)	57 (57.0)	17 (17.0)	17 (17.0)
Family history of celiac disease	56 (18.7)	15 (15.0)	18 (18.0)	23 (23.0)
Screening for associated disorders	26 (8.7)	5 (5.0)	6 (6.0)	15 (15.0)
Family history of autoimmune disorders	13 (4.3)	0 (0.0)	3 (3.0)	10 (10.0)
Procedures performed for celiac disease-related symptoms
EGD	299 (99.7)	100 (100.0)	99 (99.0)	100 (100.0)
Bone densitometry	76 (25.3)	58 (58.0)	9 (9.0)	9 (9.0)
Colonoscopy	48 (16.0)	11 (11.0)	33 (33.0)	4 (4.0)
Abdominal imaging	9 (3.0)	2 (2.0)	4 (4.0)	3 (3.0)
Enteroscopy	2 (0.7)	1 (1.0)	1 (1.0)	0 (0.0)
Capsule endoscopy	1 (0.3)	1 (1.0)	0 (0.0)	0 (0.0)
Other	15 (5.0)	2 (2.0)	3 (3.0)	10 (10.0)
None	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
Biopsy results
Normal	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
Increased intraepithelial lymphocytes	2 (0.7)	1 (1.0)	1 (1.0)	0 (0.0)
Mild/partial villous atrophy	77 (25.7)	22 (22.0)	36 (36.0)	19 (19.0)
Subtotal villous atrophy	115 (38.3)	31 (31.0)	40 (40.0)	44 (44.0)
Total/complete villous atrophy	103 (34.3)	46 (46.0)	22 (22.0)	35 (35.0)
Other	3 (1.0)	0 (0.0)	1 (1.0)	2 (2.0)

¹One patient had date of birth missing and is not included in the calculation.

²Overall percentage may be greater than 100%, as more than one option could be indicated.

³Extraintestinal manifestations can be found in Table 2.

EGD: Esophagogastroduodenoscopy; IQR: Interquartile range; SD: Standard deviation.