Do any mummas know if coeliac can be missed in being diagnosed.
I’ve had bloods, stool, endoscopy, colonoscopy. All clear. I’m worried that when I had these tests done that I was off of gluten for a while.
Can this cause the wrong diagnosis? Would it have stilled showed in endoscopy?
Is there a gene test for it. We have family history of conditions linked to Coeliac. Can it be missed? is it something that wouldn’t be missed in so many tests.
Please don’t tell me to ask a Dr.
TIA
7 Replies
Avoiding gluten prior to testing can give false negative results.
My understanding is gluten needs to be present in the body to test for coeliacs, at least that's what I was told during my testing process (my health complaint ended up being something else). I had to eat something gluten based daily for about 2 weeks prior to my blood/stool samples.
I'm surprised your doctors didn't tell you that!
Unfortunately, you'll probably need to start the testing process again.
This was what I was told by my sons dr too.
No 2 diff Drs didn’t even ask me if I had eaten any or tell me too. Not even the gastroenterologist when I went in for my endoscopy and colonoscopy 😩 it’s only since reading on this page on other’s posts that I have clicked on to this.
I even asked another Dr this recently and she said endoscopy would have showed. If it didn’t show then I don’t have it. I keep going around in circles, it’s so frustrating.
Yes. You need to be on gluten for it to test accurately. But, you can still have damage to your villi through an endoscopy biopsy if it’s bad. Regardless of any tests, if it gives you unpleasant symptoms you don’t want, then I wouldn’t eat it. It’s all about quality of life, in my opinion!
I was told that by the time your coeliac your gut is completely shot. So I am gluten intolerant. So grateful as I was getting intense pain and was quite sick everytime I ate it and my results were coming up fine. Strong family link too. My problems disappeared once I removed it from my diet. Also was then told by removing it my tests wouldn't be accurate but there was no way I was taking it and going through that pain for testing! A naturopath after that helped me to focus on healing my gut ;)