Anyone had a coeliac diagnosis but no symptoms? Endoscopy.

[wobblyinsideandout]

I had a gastroscopy today as I’ve had episodes of food getting stuck. They’ve found signs for coeliac (scalloped mucosa) so have taken biopsies.
Im really curious about others experiences about getting to middle age with no real symptoms but getting a coeliac diagnosis? Of course there’s a good chance it may not be, but if it is, how has it been hiding?
Ive never loved bread as it makes me feel too full. Same with other doughy products like pizza. I can and do eat it though. If I eat bread first thing in an empty stomach then (TMI!) I need to go to the loo pretty quickly. Fine other times if the day, though. And I love pasta.

The internet says silent coeliac is indeed a thing. It’s going to be a frustrating 10 week wait for the results!!

Hopeful bump 😊

Hi - but you have just described your symptoms. It's not normal to rush to the toilet after eating bread 😀

My niece has it, but noticed a stomach ache after drinking tea (bizarre) and thought she might be dairy intolerant

. An allergy specialist did a load of blood tests and found she is coeliac. She feels a lot better since not eating gluten as used to be very 'bloated' and had just sort of got used to it. She is not getting an endoscopy.

I didn't have major symptoms or sometimes none at all so it was a surprise when I got diagnosed.
The odd time, I'd get a belly ache after eating blueberry muffins/ white bread but I put that down to eating processed/ bad for you food.

I was diagnosed via endoscopy with no symptoms - was a bit of a shock as hadn't got any of the traditional symptoms either

I was diagnosed after an endoscopy following a positive blood test, my son was diagnosed first and all family members tested. I had no symptoms, used to get a lot of indigestion if I ate pastry, but that was it! Now if I am accidentally glutened I am horrendously sick and feel terrible for days. If you are coeliac just

dd is coeliac but has symptoms, however on the fb groups I joined there’s a lot of silent coeliacs. Obviously it raises your risk of cancer, etc if they were to keep eating gluten so they stop. But I can imagine it’s hard to give up so much stuff if it’s not making you really ill. But I agree you do have a symptom with the need to go to the toilet.

And yes one reason you get limited symptoms is because your villiwwill be so flattened that you don’t absorb stuff including gluten very well. Once you stop eating it and your villi recover if you eat some by accident your symptoms will be worse. Once the upside you’ll absorb other nutrients better.

Yes, my husband was diagnosed in his mid forties, was an unexpected outcome of tests as had not been obvious. Quite the adjustment for everyone following his diagnosis to ensure no contamination now.

Interesting replies! The bread thing seems to have got better as I’ve got older. As I said on my OP I love pasta and I’ve always been able to eat big portions of it without any GI symptoms. No issue with beers, either.

I’ve gone down a bit of a rabbit hole re symptoms. I was diagnosed with ADHD about 8yrs ago. Meds did not help. Now it seems like the ADHD symptoms could potentially be due to coeliac? Brain fog, poor memory etc.

I’m now really desperate to get my results back!

You’re not hypermobile by any chance are you?

I’m not typically hyper mobile, no. But I have some dyspraxic traits, such a terrible handwriting which is to do with joint stability. I have some speech dyspraxia. I’ve also read that the problem with food getting stuck, so the reason for my endoscopy, could be due to hyper mobility in the oesophagus. The endoscopy findings for my oesophagus were normal, but that’s because there’s no inflammation or masses.

I developed coeliac (or at least, a strong intolerance) around menopause with similar symptoms to you. Quite a few people have mentioned similar to me. You probably have been making adjustments without realising.

Coming back to this thread as I’m now worried that I won’t get an accurate result as I hadn’t consciously eaten a gluten heavy diet in the run up to the biopsy. Reading online, that’s what’s advised. But of course I had no clue that coeliac was something that would come up as an issue so paid no attention to my diet at all! Is this going to be a problem?

My sister's only symptom was a rash on her thighs. However, now she's given up gluten, if she does have it, she throws up violently.

Are you able to postpone the endoscopy at all? I'm guessing not. But if you could, then you could eat more gluten before.

I’ve already had it. Coeliac wasn’t even a consideration on the run up to it!

I meant the biopsy, rather than endoscopy, but my brain is easily confused at the moment!

Are there any coeliacs in your family? Our aunt, who was diagnosed in her teens, when my sister was diagnosed (late 30s, I think, can't remember exactly,) said, "I've been waiting years for one of you to be diagnosed!"

Biopsy was done at the same time.
Not aware of anyone in my famly, though there are lots of extended family members that I’ve never me so maybe?

I asked the GP how much gluten I'd need to eat if I had a biopsy (I didn't bother in the end as I am 100% certain I'm gluten intolerant and avoiding it is all you can do) and she said a slice of toast a day is sufficient. So try not to worry.

If you’ve got scalloped mucosa it sounds like you’ve been eating enough gluten for there to be an affect? Think they just need to rule out other possible causes like CVID or Crohn’s with the biopsy.

I’ve asked my GP for the coeliac blood tests, as it seems that it’s likely I’ll have to wait a really long time for the biopsy results. Plus usually the blood test would have been done first so I’d have that result already.
It’s booked for three weeks time. I’m going to make sure I have a couple of slices of bread a day in the run up to it. I’m often lazy and just snack at lunch but I’m going to make myself have a sandwich each day!

Coming back to this thread as I’m still waiting for results and it’s driving me mad. I am not a patient person. I’m also one of those people who, if there something coming up (the results) then I find it hard to focus on other stuff (thanks ADHD!).
I had blood tests last Monday but no results as yet.
I got an email this morning to say my NHS Ap had been updated with new test results. Yay, I thought. I checked and it’s from histology so the biopsy test results are in. But no, results aren’t available till 19th Feb. So now I just need to keep my fingers crossed that the gastro consultant reviews them quickly. I’m sure this won’t be at the top of their list, though as it’s not something that required urgency. Which is fine. But bloody hell this is frustrating!!!

@wobblyinsideandout did you get your results?