Im very lost/ conflicting test results

[Bec the Lemon]

So I was told I had celiac disease based on my blood test results about a month ago but today I was told my biopsy showed no evidence of celiac. I asked my doctor what that meant and she had no clue. Apparently shes making a referral for me to see a new set of specialists but who knows how long that will take. I asked if I could go back to eating gluten or not and I was told I could "Try it and see if it upsets me" but gluten never gave me any stomach upset in the first place so that seems irrelevant.  Did anyone else here have positive blood test and negative biopsy results? Did you go back to eating gluten? Is there something else I should be doing? 

[Jmg]

1 hour ago, Bec the Lemon said:

So I was told I had celiac disease based on my blood test results about a month ago but today I was told my biopsy showed no evidence of celiac. I asked my doctor what that meant and she had no clue. Apparently shes making a referral for me to see a new set of specialists but who knows how long that will take. I asked if I could go back to eating gluten or not and I was told I could "Try it and see if it upsets me" but gluten never gave me any stomach upset in the first place so that seems irrelevant.  Did anyone else here have positive blood test and negative biopsy results? Did you go back to eating gluten? Is there something else I should be doing? 

The negative biopsy doesn't mean you don't have celiac, just that it's unproven. Although if you have a positive blood then there's very good reasons for suspicion. 

How many biopsies were taken? I had 4, the recommendation in US is 7. The more the better the chance of finding damage. Although it's possible to miss the damage even then, the area is vast and there are parts which aren't covered by the endoscope and only a capsule can reveal damage there. 

It sounds like you're seeing a regular doctor rather than a celiac specialist? They can sometimes steer you in the wrong direction, however well meaning they may be. Can you get a date for when you'll be referred?

You've gone gluten free. When did you do this? It could've effected the biopsy. Have you noticed any changes since you went gluten-free? You could keep a food/symptom diary to see if you can track any reaction to the diet. A reaction plus symptom relief on diet plus positive blood may equal a diagnosis even without confirmation from biopsy. 

Another possibiliy NCGS, you react to gluten but there's no intestinal damage to secure a celiac diagnosis. You're not there yet though. First job I suggest is getting some info about that referral. Will it be a celiac specialist? Can you write to them in advance and ask them if they want you back on gluten for further testing? 

BEst of luck, the diagnostic process can be a bit of a grind. Stay the course and fight for answers!

 

Matt