Is coeliac disease something you always have even if you don't show symptoms?

[iwouldgoouttonight]

DS is being tested for it - I have it but didn't show any symptoms until a year ago so I had a blood test and found out I had it. Does that mean I always had it but just wasn't showing symptoms?

I think what I'm trying to ask is if DS's tests come back negative does that mean he will never have it, or is it something you can get when you're older.

I've asked the doctor but he didn't seem to know, and its not very clear on the coeliac society website.

Hi,
Copied this from a website:

Celiac disease is a genetically determined disease. We will review some of the genetic studies during this talk. We believe strongly that you have celiac disease from the moment you are born. It only manifests, however, after ingesting gluten. So with babies and newborns without gluten in their diets, there is no problem. Once gluten goes into the diet, the disease begins to be manifested.

The website this is from is:
www.csaceliacs.org/library/howsandwhys.php

They thought my Anemia was due to this but my blood test came back negative.

Many coeliacs suffer symptoms for years without knowing they are coeliacs. It is I am sure a genetic condition.

I felt better instantly on adopting a gluten and lactose free diet after 45 years. However, after so many years of exposure to gluten I had also developed lactose intolerance.

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I know loads of people who only seemed to develop coeliac disease in middle age. My guess is that more than one digestive disorder is involved -- "coeliac" disease may be an umbrella term for several related but different gluten-digestion disorders.

My DH and MIL both have it, diagnosed during the past 5 years. I think DH has had it for years. However, both my DSs have been tested for it and we have been told that although negative now, it may develop in later life. As you have it and it can run in families, it might be good to have your ds tested again in a few years - as you know, you may not show symptoms, but the damage to intestines can still be done.

It's in the genes, so you are predisposed to it. It's common in Europe.

If you don't eat wheat much, you might not be affected much, however, the symptoms are not necessarily all in the gut, especially if someone gets beyond gut issues as various organs can be also affected in a secondary way and this includes many autoimmune and seemingly inexplicable conditions.

If you avoid wheat (and before you acquire permanent damage to gut or other organs), you pretty much would stay healthy.

The "gold" standard celiac test only picks up most severely affected cases as you can be gluten sensitive with no or minor gut symptoms.

For more in depth gluten info check up celiac.com, awesome!

nightcat - that is exactly how it was for me. Thecoeleiac test with a biopsy showed nothing.

However, taking gluten out and lactose made an immediate difference. My Dad is incrediby sensitive to milk and I am convinced he is coeliac too but never diagnosed.

I get a lot of bladder pain which doctors failed to diagnose for years but I kept telling them it was related to 'something I was eating' because I knew that when I fasted for 24 hours I felt 100% better.

Eventually I was diagnosed with intersticial cystitis which is not fully understood but is thougt to an autoimmune disease and related to food triggers that cause bladder pain. I get joint and kidney pain too.

Eventually I read about coeliac on MN and gave the gluten free and lactose free diet a try. I was amazed and years of feeling tired, itchy skin, troublesome guts, severe bladder pain all made sense. Thankfully, now mostly gone.

I agree with ragged and also suspect there is a whole spectrum of gluten intolerance from full blown coeliac to 'IBS' type symptoms.

Hi BB, my ds had neuro problems and I have found out a lot about gluten from neurologist's research.
And I totally disagree with eating gluten until you show damage properly, as severe damage can be permanent.
Lactose intolerance is often a result of gluten damage to the gut (lactase producing enzyme are first to be affected.
I also can't believe how much difference food can make. I had blood in urine for years, treated with a/bs and/or wait and see methodology which never made any difference, but it went away after a couple of years of gluten free, how awesome is that!

I read that there is a genetic predisposition along with ingesting gluten and a trigger (life events, emotional stress). For some people that would be as a baby, for others it would come later in life. Whether they always had it is difficult to say. I had symptoms for 10 years before I was diagnosed as did other family members but as we were not tested at that time it is impossible to say if we had it as children (we weren't ill as babies).

my DH is a coeliac, and got diagnosed in mid-30s - around the same time as his DD (my stepDD) who was 8 at the time.

he has IBS from it being undiagnosed for so long, so even though he is better for not eating gluten, he still suffers a lot.

I have no idea what would've triggered the sudden worsening of symptoms, but I reckon he would've had it all along. he had numerous unexplained stomach problems as a baby which could be related.

WRT possibly retesting - I was told it's worth keeping an open mind. my DD was tested just after her 2nd birthday, because she was having dodgy nappies. it came back negative, but the doctor said as she has a 1 in 10 chance of having it, it may be worth having her tested again in a few years.

I didn't know about the link between coeliac and glucose intolerance, that's really interesting.

apparently in Italy they test all children at age 5?

oops I meant lactose not glucose

oh, and here's something that completely takes the piss - DH went to Dr recently to sort out prescription gluten free food - we've just become entitled to free prescriptions.

anyway the Dr looked through his records and there was no record of his diagnosis! and he told him that in order to get food he will have to have a biopsy, or get retested (which would mean eating gluten again to get the antibodies up, and being in unbelievable pain!)

AAAAAARGH