Is it possible to have no symptoms when eating gluten for the first time in awhile?

[Amy101066]

I am still in the testing phase for this disease. My blood test was negative (I was eating gluten leading up to it), but I still reacted to gluten so assumed it was a fructan intolerance, as my symptoms came 1-2 days later, instead of soon after eating, which I heard is more common with Celiac disease. Although at its worst, I am having stomach pain straight after eating any sort of food, a week after eating gluten, so I guess I need to wait for my system to calm down again.

I only started to wonder again if I really do have celiac disease, when I found out I have a positive gene mutation for it on a gene test last week. My sister, mum, grandmother, aunty and cousin all on my mum's side all have celiac disease too, it turns out. Well, my sister got a positive blood test and is still waiting on the endoscopy.

But after being gluten free for so long, I ate 2 plates of gluten-containing pasta in 2 days about 3 weeks ago and had absolutely no symptoms. Is this possible with mild cases of celiac diseases, that when your system is relatively calm, it takes awhile for symptoms to start to show up again?

 

[cristiana]

Hello Amy and welcome to the forum!

When you say you are still in the testing phase of this disease, do I take it that you are awaiting a biopsy via endoscopy?  If that is the case, when is it booked for?  If you are having one, you will need to ensure you are eating the equivalent of 2 pieces of normal (glutenous) bread PER DAY until that date, for between 6-8 weeks, to ensure the accuracy of the test.

Even with negative blood tests, if you/your doctor strongly suspects coeliac disease, it would be useful to have this endoscopy, as a small number of coeliacs have negative blood tests but positive biopsies.

If after all of this you still get negative results, you could be dealing with Non-Coeliac Gluten Intolerance which means it would still be helpful to adopt a gluten free diet.

But going back to your question, every coeliac is different in the way they react to glutening.   Even among my own small group of coeliac friends and acquaintances, it varies - I have one friend who doesn't know if she has been glutened, whereas I had a slice of normal cake by mistake at Christmas and I seriously wondered at one point if I would end up at ER.  My heartbeat was all over the place, I was very sick and could hardly stand up.  Yet another acquaintance has a brother who was diagnosed with coeliac disease as a child and now has gone back to eating gluten again because he says "it has no effect".  In that particular instance, there can be only two explanations for this in my opinion: either he was never a coeliac in the first place and was misdiagnosed, or he is a coeliac and although he is asymptomatic for the moment, he putting his health at real risk in the long term. 

I hope this helps clear a few things up but please do come back to us if we can help any further.

Cristiana

Edited September 22, 2021 by cristiana

[trents]

Amy, your post is confusing as to the chronology of when you were eating regular amounts of gluten prior to and after testing. You say you are "still in the testing phase" but you apparently went gluten free at some point but then went back on gluten after a long time of being off gluten and didn't get sick.

The guidelines for valid testing are to have been consuming gluten daily in the amount of at least two slices of wheat bread (or it's equivalent) for at least 6-8 weeks before the serological antibody testing and that same amount of gluten for at least two weeks prior to the endoscopy/biopsy. Where are you with that schedule? Sounds like you already had the serological antibody test but are scheduled for the endoscopy/antibody test?

A bullet list of the sequence of events that have happened with what hasn't happened would be helpful to understand your original post, including when you were on gluten and when you were off gluten in relation to testing.

Edited September 22, 2021 by trents