Coeliac disease

[Shaniece]

Hiya, can someone give me the symtpoms of coeliacs?.. I have been feeling exhausted, loosing weight, hair falling out and generally lethargic.

Last year I had blood tests and a positive result for Coeliacs however an endoscopy proved negative. Just wondering what other Coeliac sufferers experienced prior to diagnosis?

i had lots of stomach symptoms, and was definately lethargic as I had chronic diahorrea for about 12 weeks, and my iron levels were in my boots.

your symptoms could also be indicative of an overactove thyroid as well. Have you been tested for this?

I assume they took a sample and did a biopsy? As far as I know this is pretty conclusive so if there was gut damamge of the sort evidenced by coeliac disease they would have found it.

thanks lackaDaisy. Yes I think they did a biopsy, all I remember is the DOc saying he couldn't see anything indicating Coeliacs but it's very odd that the blood results said otherwise isn't it?

I have had bloods taken for HB and thyroid and awaiting results. The hair loss is worrying me, I have very fine hair and can't afford to lose anymore.

I think becasue the blood results are a screening test, they can give false negatives, but not sure about false positives. I'm also pretty sure that someone on here said once that the biopsy can miss the gut damage. I'll try and find something for you on the coeliac UK website.

here we go symptoms

did you stop eating gluten containing foods prior to the biopsy? if so then this might have skewed the results.

if you keep this bumped, flamingtoaster will hopefully see it. She has lots of information and is more knowledgeable about it than me.

thanks lackaDaisy. No I didn't stop eating gluten prior to biopsy. Maybe I should try and push for another endoscopy??

I'm trying to find out info on false positives for you, but can't.

You should certainly push for further investigations if the thyroid tests come back as normal.

there is also advice on coeliac UK on getting a diagnosis. They also have a helpline, so perhaps a call to them might shed some light on the positive bloods, but negative biopsy....if indeed they did a biopsy; they might not have if, as the doc said, things looked OK, but I'd imagine that this isn't very good practice as the damage needs to be examined microsopically as far as I'm aware.

There are several reasons why you could get a positive blood test and a negative biopsy and still be coeliac. As lackaDAISYcal has said they just sample various areas of the gut so could miss damage, or you could be in the early stages of coeliac disease where the damage is not yet showing, or you may not have been eating enough gluten to damage the gut (the current recommendation is six slices of bread a day - or equivalent in pasta etc.) for at least three months prior to the biopsy).

Have a read of the posts here:

coeliac.info/suppboard/viewtopic.php?t=966

for more explanation of the postive blood test/negative biopsy combination.

As is mentioned on the link you could get the gene test done to see if you are carrying the coeliac gene - that might be enough to get your doctor to "treat as coeliac" given your symptoms (particularly if you had a less than recommended gluten intake before the biopsy).

I've found this on an american site.

The column on positive predictive value is the percentage probability of having the disease if the bloods are positive. So if you tested positive for EMA, the chances of you having the disease is 97%. If you tested positive for tTGA (I think noted AGA on the american site) then the chances of you having the disease are 87/88%.

I think you need to find out exactly what was tested for as some labs only test for one or the other.

Coeliac UK also sell home testing kits, but recommend that a positive on this os followed up by a biopsy.

My blood test was done as a catch all as I was having tests for something else and they found out I had coeliac almost by accident, so I never had to go through all of this.

I hope you can get a diagnosis of whatever is going on soon.

I was hoping you'd see this flamingtoaster. There was another thread last night as well.

lackaDAISYcal - I've now posted on the other thread - I'm not sure how much help I was though!

Re blood tests - there is a lot of information saved here:
coeliac.info/suppboard/viewtopic.php?t=796&highlight=predictive

probably about as much help as me

my mum has coeliac disease and after frequent testing over 10 years as I was always anaemic the blood test finally came back positive and i had the biopsy done and then got diagnosed. I didn't show many of the classic symptoms aprt from anaemia, very loose poo all the time, tired and very windy. Even now i know if something has slipped through as i get windy....

I work on an adhoc basis for one of the gluten-free food companies (Juvela) and will be helping man their stall at the Coeliac Uk AGM in Cardiff next month if anyone is going - come over & say hi and i'll put some extra freebies in your bag

Hi i was diagnosed with cd since january this year I am now wanting to go on holiday abroad and finding it difficult to find a hotel to cater!Would anyone be so kind to give any advice or recomendtions please?

If you excluded gluten from your diet prior to the biopsy the result would be negative as you need the gluten to flatten the villi and thats what they look for on a biopsy. I found out almost 2yrs ago that I had coeliacs disease. My symptoms included getting very full very quickly, and my cheeks burning after food. I would get bloated to the point where I couldnt lie on my side or front. If I'd had lots of gluten containing food, I would have the above symptoms aswell as nausea and vomiting about 7hours after eating. I'd feel nauseous and have a loss of appetite for a few days after eating gluten. I was dizzy quite a lot of the time as was unable to absorb Iron from my diet. I'd have very little energy and no 'get up and go'. SInce following a gluten-free diet the majority of these symptoms have one but re-appear even worse now if I have gluten as its more of a shock to the system.

Hi Janey123, it's a bit late for you, but there is some advice here for coeliacs wanting to go on holiday abroad:

coeliac.proboards.com/index.cgi?board=abroad

The best way to look at it is that everyone has coeliac disease to some degree. Gluten was not part of our diet for roughly 99.3% of our history. It's only recently we went from hunter gatherers to agriculture. Some people have adapted better than others digesting gluten.

And then sugar has a massive effect on our gut health. We only started having this very very recently.

try the paleo diet because its how we are supposed to be eating for our species. Some people cut out diary but i and many others find this fine aslong as its good quality.

so its mainly meat. eggs, veg, fruit, nuts, butter, olive oil, lard, coconut oil and diary

cut out grains, sugar, modern seed oils ect

My dds have been diagnosed with coeliacs with bloods alone -I did not want them to have another procedure as they were young and it has not affected an official diagnosis as they both had a 'strong positive' blood result.