Is coeliac's always visible on biopsy or is it normal to be sent off

[avenue123]

My daughter had a blood test for coeliac's a few months ago her ttg was 26 the GP put her straight on a gluten free diet. When we finally got a consultant appointment we had to go back on gluten before she had a biopsy, the blood test at this point was normal they said due to the gluten free diet. 6 weeks later she's had her biopsy the consultant said he couldn't see anything but is sending it off. Do they always see things or is it normal not too? Very worried as she hasn't any hair and lots of symptoms but we don't seem to be getting any where. Any advice would be greatly received!

[Mmmm]

My ttg was 128. I am 63 years old and had had symptoms all my life but no-one had given me the right test. There was no damage visible at biopsy so they had to send it off and the cd diagnosis was confirmed about 8 weeks later. I had been eating a high gluten diet because I also have type 1 diabetes. I was totally frustrated like you avenue123 because the diagnostic process took so long. PS I was talking to a parent at the weekend who said her doctor won't send her daughter for biopsy because her ttg is "only 25" and she should just carry on eating as normal. I didn't think that sounded right.

[avenue123 in reply to Mmmm]

We were told anything above 4. Was suggestive of coeliac's.

[Mmmm]

My dietician said anything above 7.

[jan44]

My GP said between 0 and 7 was normal.

[barny]

when i had my biopsey they told me right away and had to go on a gf diet i am 67 and was diagnosed 18months ago so gl

[AdvanceNutrition]

Your question highlights the problems with conventional testing - it is not that daughter is not being affected by gluten but that the testing generally use is not accurate enough. For example when researchers look at populations who have Coeliac Disease confirmed by biopsy, and look to see how accurate the blood tests are, they come up with percentages above 95%, but this is because they are only including people who have total villous atrophy in their Study Group- because that’s the standard definition of Coeliac Disease. If we were to expand the inclusion of those with partial villous atrophy, or include those whom as of yet just show the mechanism that wears down the villi (increased intraepithelial lymphocytes), then the Sensitivity and Specificity of anti- endomysial or anti-transglutaminase goes down, in some studies dramatically down, to as low as 27-32% - loads of studies suggest this e.g

Abrams JA, Diamond B, Rotterdam H, Green PH. Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy, Dig Dis Sci. 2004 Apr;49(4):546-50

This is often more common in children too

So it is not that gluten is not affecting your daughter but the fault is the testing. Thankfully from November a new array of tests will be available from the CYREX labs in the UK which specialises in gluten sensitivity and immunological tests - more specific and more wide ranging in testing

Your daughter has symptoms - gluten is affecting her - the CYREX tests may also reveal cross reactivity that could also be affecting her which may be worth looking into