Coeliac - Not a proper diagnosis

[GlutenFreeDaduk]

I was diagnosed with Coeliac disease 6 months ago. This was in the form of a blood test as my tTg-IgA was high in the 40's. I haven't eaten gluten this whole time now but my dietician would like me to have an endoscopy for a definite diagnosis. I have been advise to contain gluten in my diet again for the next 6 weeks, I am kind of worried having not eaten it for so long. Will I be ok? Has anyone been in this situation?

Scott

[trents]

Why does your dietician wish you to have a definite diagnosis?

Since you have adopted the gluten free diet, have your symptoms improved? I so, don't you have your answer?

The tTG-IGA blood antibody test is very sensitive and very specific for celiac disease. The chances of a positive test result being caused by something besides celiac disease are very slim, no more than 5%. From your "handle" and from the way you spell "coeliac" I assume you live in the UK where an official diagnosis of celiac disease in the absence of tTG-IGA scores of 10x normal or greater seems to require an endoscopy/biopsy to arrive at an official diagnosis. IMO that is unfortunate. But I realize an official diagnosis entitles you to gluten free food subsidies and free follow-up care through the NIH.

Yes, if you have been truly gluten free for six months you can expect stronger reactions to gluten than before. 

Edited January 6, 2024 by trents

[Scott Adams]

I agree, at this point do you need an official diagnosis for any purpose, or is it just your doctor who, for some reason, feels that they need it? 

If you know that gluten causes you health issues, and you feel better and have recovered on a gluten-free diet and have no issues being on the diet, I'm not sure it would make any sense to go through a gluten challenge. If the biopsy ended up negative, would you state eating gluten again?

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day: