Celiac disease query

[Ivostas66]

Had my 12 month consultation just prior to Christmas. Consultant was chuffed with levels and increased stability/ control. However, the test for celiac that is done as a matter of course came back quite high and he has advised my doctor that a biopsy would be something he should consider for me. Not heard anything from my doctor yet, but also I have not experienced any of the symptoms for celiac disease.

Has anyone here had a similar experience? The consultant said that it can be quite common for diabetics to develop celiac disease and vice versa. Anyone know anything about what happens next?

 

[trophywench]

Err, what 'normal test for coeliac' ?

 

[AndBreathe]

Had my 12 month consultation just prior to Christmas. Consultant was chuffed with levels and increased stability/ control. However, the test for celiac that is done as a matter of course came back quite high and he has advised my doctor that a biopsy would be something he should consider for me. Not heard anything from my doctor yet, but also I have not experienced any of the symptoms for celiac disease.

Has anyone here had a similar experience? The consultant said that it can be quite common for diabetics to develop celiac disease and vice versa. Anyone know anything about what happens next?

Matt - I'm not coeliac myself, although I do follow a strictly GF diet, on medical advice.

One thing is important at this stage and that is that you don't change your diet whilst this process is ongoing. If, on the grounds of your likely diagnosis, you modify your diet, you could confuse matters by giving up gluten, thus decreasing your potential inflamation.

I know that seems a bit bonkers, but I can see the logic. In this instance, if could sway a false negative, rather than the more usual false positive.

Good luck with it all.

 

[AndBreathe]

Err, what 'normal test for coeliac' ?

I may be wrong, but I read that as meaning the blood test for IgA Tissue transglutaminase antibody - often abbreviated to tTG antibodies.

 

[TheClockworkDodo]

I had test for coeliac disease when I was first diagnosed, Jenny, so maybe that's standard, and Matt just had it done a bit late? I'm not sure if it's one of the ones they do every time.

I was going to say the test only works if you are eating gluten, Matt, so if you don't normally, let them know. And as AndBreathe said, don't change anything without consulting them.

If you do turn out to have it, let us know - I have info. about gluten-free products a friend gave me a while ago, and I'm sure others will be able to advise about what to eat/not eat too.

 

[trophywench]

I simply wasn't aware it was something they tested newly diagnosed people for, or in fact anyone, unless they had symptoms of gluten intolerance. There again, I don't come across newly diagnosed folk except on here. Don't recall anyone mentioning it, ever before.

 

[Sally71]

As far as I am aware my daughter is tested for coeliac disease every year at her annual review, among other things.

 

[novonord]

sounds like you've had a high result on the ttg test;
you may have coeliac disease without any symptoms, without any signs or with nebulous signs such as fatigue, iron deficiency anaemia
only some patients suffer classical malabsorption, a very small number have a characteristic itchy blistering skin condition, dermatitis herpetiformis,
there is an increased incidence in autoimmune diabetes patients and patients with other autoimmune diseases or affected close relatives.
antibodies can develop at any age- in my case at 61 and 84 for my mother!
positive predictive value for high ttg is overall about 30% so not that high, most patients have normal biopsies only a minority have atrophy,
so do not despair!
but the predictive value depends on the titre- v high titres over 1000 are more likely to have abnormal biopsies,
do not start a gluten free diet until you have had the biopsy
it's an absolute pain being on the gluten free diet, especially when you are already on the diabetic diet, very restrictive and quite difficult to eliminate gluten entirely as it's in so many foods so do not go gluten free until you're certain beyond any shadow of a doubt that you have coeliac with convincing changes on the biopsy....often biopsies are equivocal in my experience though many are barn door...
overall prevalence of coeliac disease is about 1%.

 

[AndBreathe]

I simply wasn't aware it was something they tested newly diagnosed people for, or in fact anyone, unless they had symptoms of gluten intolerance. There again, I don't come across newly diagnosed folk except on here. Don't recall anyone mentioning it, ever before.

I was tested for almost every AI condition the Endo could think of when he heard my family medical history. AI conditions tend to hunt in packs (figuratively speaking).

 

[Ivostas66]

Thank you all for the advice. Apparently at my clinic the test is now done as standard as there is a risk of one auto immune increasing the chance of others (Coeliac, thyroid...). The reading was 30%, hence the red flag. I haven't changed my diet as a result and await news from my doctor.

 

[mikeyB]

If you haven’t got any symptoms, why worry? As novonord says, it’s a broad church. If you don’t have symptoms, you’re unlikely to get deficiencies.

In active coeliac disease 98% of folk have raised TTG, but....

Raised TTG can happen in T1 diabetes, thyroiditis and inflammatory bowel disease. It’s NOT a specific marker for coeliac disease.

 

[trophywench]

They only started testing me for Thyroid probs from 1998 when I moved to Coventry. Never been tested for anything else AI in me life. Nobody in our family, mom's or dad's side, were known to have anything AI either cos they did repeatedly ask about that in hospital in 1972. Not since though.

This TTG test sounds about as reliable as the PSA blood test then Mike. I remember a coeliac lady at work's daughter having the symptoms when she was at Uni - she went with her for her endoscopy. What do they do biopsies of/on, to prove it, cos I've not heard of that in this context?

 

[mikeyB]

The biopsies are taken from the lining of the small bowel, looking for microscopic changes in the villi that show atrophy or inflammation which prove the presence of coeliac disease.

 

[JMyrtle]

And I cannot even get cholesterol test done, but then we are poor country mice !

 

[Bally]

Had my 12 month consultation just prior to Christmas. Consultant was chuffed with levels and increased stability/ control. However, the test for celiac that is done as a matter of course came back quite high and he has advised my doctor that a biopsy would be something he should consider for me. Not heard anything from my doctor yet, but also I have not experienced any of the symptoms for celiac disease.

Has anyone here had a similar experience? The consultant said that it can be quite common for diabetics to develop celiac disease and vice versa. Anyone know anything about what happens next?

I have celiac disease and been told I might have type 1 although I have type 2 diabetes, I had a blood test for the celiac and has a camera down my throat and biopsy of the stomach to confirm celiac, I regularly get high bloods low to mid 20s but I believe celiac food have lots of sugar in it.

 

[AndBreathe]

I have celiac disease and been told I might have type 1 although I have type 2 diabetes, I had a blood test for the celiac and has a camera down my throat and biopsy of the stomach to confirm celiac, I regularly get high bloods low to mid 20s but I believe celiac food have lots of sugar in it.

I don't use any manufacturd gluen free foods, except sy sauce and Worcestershire sauce. I just stick with natural foods that don't naturally have glutenin them.