False reading as of right now

[J1707]

Hi. I'm Cassie and so it was some time back in December of last year I was suspected of Celiac disease through blood tests and major symptoms I was having and so they straight up put me on a gluten free diet and therefore I was though I still needed to go through a biopsy and I did and it came back false and I'm about frustrated with it all due to feeling great after switching my diet over to this life changing way of living yet apparently I had a lot of folk say I should have had some gluten in there in order to tell if I am or not, but i was just doing what my doc said to do and just go gluten free and now I have to go back to get another biopsy I was told was going to have to happen, but that's AFTER I see my doctor and specialist first this month just to find out if that's still a go for that or like what's going on ? Has anyone else gone through this ?? 😭

[trents]

Welcome to the forum, Cassie! That was one long sentence! A few periods stuck in here and there would have made it a little more readable. You must have composed it on hour phone.

Yes, the biopsy was probably made invalid because you had been on a gluten free diet. The biopsy looks for the damage caused by celiac disease to the lining of the small bowel from the inflammation that eating gluten brings about. Once you remove the gluten from the diet, the inflammation dies down and the small bowel lining begins to heal. Since it is now healed, there is no damage detected by the biopsy. But we hear these kinds of stories on this forum over and over. Physicians fail to give their patients instructions about these things. It is frustrating.

If you decide that you want to get the biopsy redone in order to get an official diagnosis of celiac disease you would need to be eating a generous amount of gluten daily for several weeks. The amount of gluten found in 4-6 slices of bread for a month or so should do it. Otherwise, just continue on with the gluten free lifestyle and enjoy your health.

[J1707]

Yes I definitely wrote this on my phone and still learning how to write correctly, I'm so sorry, but it would definitely be helpful to redo it that is after being put back on a gluten diet so it can possibly be more i guess noticable if I am? I've always had issues like these quite a lot since majorly my teen years , but it didn't become a huge problem til after having my daughter and so they all suspect me of possible celiac due to my blood tests and symptoms I've had when I was eating gluten filled food so it's definitely been frustrating that's for sure and thank you for the welcoming 😄

[Scott Adams]

As this point do you really need a piece of paper with a formal diagnosis to tell you that you should not eat gluten? This is always the question I ask to those who seem to have figured out that they have a gluten sensitivity, but got bad instructions from their doctor about the testing protocol. Only you can answer this question, but would you keep eating gluten if you got negative test results? If not, then perhaps you could just stay gluten-free? 

[J1707]

Honestly that's a good question, but I would like an official answer since I'm not a professional and my doctor's in my opinion no offense to them I'd say gone about it in a unprofessional way unless other's have been told to go gluten free, get a biopsy, just to go back gluten due to a possible false reading and then gotta go back for another biopsy

But if it really was up to me per say then I'd definitely stay gluten free like this diet change has really helped me a lot in a lot of ways, not just for health reasons, but discipline toward not indulging to much on things i used too, not to mention being more aware of what I'm intaking by reading labels more and calling the manufacturers to find more answers if needed.

[trents]

But that's the point Scott is trying to make. It is up to you. You do not have to go forward with another biopsy simply because your doctor wants you to. They work for you, not the other way around.