How dangerous is it to be an undiagnosed coeliac if you have no symptoms

[curlyblonde]

My DSis has just been diagnosed as a coeliac and has told me that I should see my GP to get a blood test as it can run in families. However, I have absolutely no symptoms and never have (I'm in my 40s) so is it really necessary? If continuing to eat gluten will cause me long term damage I will of course stop but I can't find any information online on whether this would actually be the case.

The thing with stopping gluten is that it's then hard to test if you were coeliac.

It's best to test when you are actively eating gluten.

im fairly sure youw ould know by now if you were coeliac.. typically IBS type symptoms i believe but dont quote me.

You should find out because if you're diagnosed coeliac (not just gluten intolerant) you could damage certain organs.

A friend of mine tested her DC because the other DC was coeliac. He had had no coeliac symptoms at all. His results were so off the scale the consultant phoned her personally with the results to try expedite next steps.

It can increase your risk of getting cancer, even if you have no obvious symptoms. But get tested to know for sure.

If you have no symptoms you probably don’t have coeliac. Of course there are a small number of people who are a “silent” coeliac - they don’t get sick but the gluten still damages their intestines. But even then they usually have symptoms like vitamin deficiencies.

If a family member has it then you may as well get tested for peace of mind, it’s only a quick blood test. But you probably don’t have it.

I was diagnosed as coeliac in my 30s with no digestive symptoms. My issue was anaemia that had been caused by my damaged gut not absorbing iron properly.
During my first checkup with the dietician after diagnosis I told her that I was following a GF diet "when it was practical, but wasn't overthinking it" and she told me I was 40 times more likely to develop bowel cancer if I didn't stick rigorously to the diet.
Worth getting checked IMO; there's a 1 in 10 chance you have it if your sister does, and far better to catch it before you have a ferritin level of 3, like I did 😬

This is not true, 50% of people with coeliacs have the 'silent' coeliac, which is shocking isnt it? We have it in our family and as it is genetic you must get tested as it leads to long term damage of organs due to nutrient deficiencies.

The inflammation shows itself in other ways for the silent type, through migraines, arthritis, etc and heres an interesting fact.. in Italy all children are tested for it and there are about 1.8% with Coeliacs. It makes me cross we dont test here, just think of all those undiagnosed issues!

It also sometimes manifests as MH issues, rather than digestive, which sort of makes sense given what we're starting to know about the brain-gut connection.

I was diagnosed in my early 50s: had acute symptoms for a few months but had been fine up until then.

I work with someone whose wife had Coeliac's Disease, yndiagnosed until her 40s. She became severely ill with anaemia because of years of scarring of the digestive tract, and this was how she discovered she had Coeliac's.

OK - that's pretty clear. I'll get the test!

can i ask what symptoms you suddenly had?

Can make you infertile

I know someone who went blind before they discovered it (also has other autoimmune conditions develop).
In our family we were told to get tested, test again if any symptoms and dc to be tested every 5 years.

For MrsPuddle....

I had a very upset stomach on and off for several months and a complete loss of appetite. I thought it was bowel cancer so the coeliac diagnosis came as a bit of a relief! 😳
Looking back, it explained a lot in terms of my bowel habits which were normal for me but not 'normal' if you know what I mean! Before the acute stuff, I would only go to the loo once or twice a week. Since going GF, this is much better.

I think I had Coeliac all my life was very thin as a child. Became dramatically unwell at age 28 and then followed 10 years of trying to get a diagnosis for this 'illness' that the GP/Consultants said I didn't have. I had a vast array of symptoms. Many neurological.

I asked to be tested for Coeliac they disagreed I could have it 'It only affects children' Sure enough I did have it. I would advise any one who has a first degree relative to test.There are many more undiagnosed coeliac's than diagnosed,

It's also not true that you are at a great risk of cancer, a tiny percentage develop bowel cancer from Coeliac disease. Neither does it 'damage organs'. Just get tested to put your mind at ease.

If it has genetic links, then despite you having no symptoms, I'd want to know if I was a carrier and whether your own children (if relevant) might be carriers or have it.

I can't remember the exact details but wheat contains a substance similar to morphine (on a small scale) and acts as a pain reliever in the gut. This is why a lot of people don't know they have a problem with it.

My sister was diagnosed in her 40s - she'd had a slight rash on her thighs, but nothing else.

I had no symptoms of being Coeliac until l was in my 50s., when l became anaemic. Gluten free diet has put that right.
My sister had already been diagnosed. Another relative, in his 30s asked to be tested, GP reluctant to test him but in the end reluctantly did and it came back positive. He went on gluten free diet and realised how much better he felt, he hadn't realised before that he hadn't felt completely well.

You may not have it. There are a lot is sub-clinical symptoms people with low-grade coeliac disease may have like brain fog, joint pain, skin lesions, hair loss, nutrient deficiency, digestive “issues” like constipation, slow spots, leakage, etc. Some people may feel like they are just “sensitive” to certain foods like dairy. Some people may skate through life without symptoms and be diagnosed in their 60’s like my aunt. (I was 30…) It is becoming more prevalent, but testing is better and the population is much higher…

Here’s a good NHS page on tbe complications of untreated coeliac disease.

www.nhs.uk/conditions/coeliac-disease/complications/#:~:text=Cancers%20associated%20with%20coeliac%20disease,bowel%20lymphoma%20and%20Hodgkin%20lymphoma.

That's one that I'd already read about the symptoms of coeliac disease, none of which I have. The only thing I can see to be worried about is a slightly increased risk of cancer, which apparently less than they used think.

This..coeliac in my family all presented with rash and no stomach issues. We have the gene but doctors say it takes something to activate that , a virus or something. All diagnosed later in life.
Also friends sister diagnosed as coeliac and she had no interest in being tested as no obvious symptoms. Doctor insisted and she was positive and a pain she had in her shoulder for years disappeared. Comes back if she inadvertently eats gluten.