Could This Be Coeliac Disease?

[woopsidaisy]

Hi. I am writing on behalf of a friend. She has had a very upset tummy for some months now. She went to GP a couple of weeks ago,and she has sent off blood to check for Coeliac Disease. Still awaiting results.
My friend has just rung me very distressed. She has had a dreadful night (again), incredibly painful cramps,retching,passing stools put extremely painful. She is itchy all over,especially on her tongue. her eyes hurt. She was crying,saying she could never spend another night like last night,that she has to go into hospital...she has rung and got an appointment for GP this am.
I think she should go onto a gluten free diet now,to be on the safe side.
Do these symptoms sound familiar to anyone?
Any advice?
Thanks so much!

DP had internal camera (one up and one down iyswim) to check state of his gut before being diagnosed.

His symptoms had been with him for 20 years and included excruciating migraines (that hospitalised him a couple of times) and constant, smelly diarrrea (sorry - can never spell that and don't want to) sometimes for days and days on end.

Once he was diagnosed and his lifestyle changed he is a new man.

It was two years ago this month.

Symptoms can vary greatly but my understanding is that it can only truly be diagnosed with an internal check of the gut.

A couple of weeks is too long to wait for these results. Blood samples are collected daily from GP's surgeries and taken straight to the hospital where they will go on the analyser with a few days maximum! The analyser runs for about an hour and then results are available. I would call the doctors surgery, ask for the results if they say they haven't arrived yet then ask the GP to call the path lab immunology dept and ask for the results directly. I used to work there, we gave out results this way all the time.

Either way though, with those symptoms I would head straight back to the docs immediately...just think about how many people are sat there with a sore throat or a runny nose...these symptoms would be considered priority to be seen.

Claire

Oh,thanks Oopsadaisy. Just hate to see my friend so miserable.
Very similar names,great minds eh?...

ClaireC76. I said that too! But apparently there is one guy for the whole province-N Ireland-and that is why it takes so long.
Her appointment is this am,so hopefully will get something sorted.

sorry - already going to GP - missed that bit!

She must not start a Gluten free diet until advised by a doctor as she may need further tests and excluding gluten before all investigations are complete will mean she can't get a diagnosis.

one guy doing the analysis on the samples? Thats crazy! I assume he's using standard NHS equipment though? In every lab I've ever worked in the ELISA analyser takes hundreds of samples every single day. I would question this and also say look if you've lost the sample or results at least let us know asap so she can have another sample. (unfortunately this happens on occasion too)

Claire

agree with sallysparrow157 - it's essential to get a normal blood sample unless asked to cut something out beforehand
Claire

I used to get very very similar symptoms before I cut out all gluten and lactose in my diet. Felt absolutely rotten.

Then exactly, as Ooopsadaisy felt like a completely new man once I had striclty eliminated gluten and lactose. I still cannot quite believe how ill I was and how well I am now. If I have a tiny bit of either gluten or lactose now the symptoms return with a vengence.

The thing is your friend does need to keep eating gluten and lactose until she has had all the tests. If she stops then the tests will not work.

Be warned also that gut biopsy sometimes does not reveal when someone has gluten lactose intolerance. My tests were inconclusive but I told my consultant I was going to go on a gluten/lactose free diet anyway because I was so desperate and the result was incredible.

It left me in no doubt. Within a week I was 100% better.

I see you are in N Ireland. It is well known that people from Ireland have a particular propensity to be coeliac. There are clusters of it in certain parts of the world. It is thought to be partly genetic and partly diet.

That is interesting MoreBeta. OK,no gluten free until know more. No,there are analysis labs in each hospital. I'm not sure where the "one guy" came into it,but this was given as areason why the test results would take 3 weeks. It has been two weeks since sample sent.
Thanks for all the responses.

I have Coeliac and it can present in many different ways, your friends's symptoms are different to I had and another family member who has it. I have IBS and did have severe cramps and wind at times and also diarreah but nothing that stood out. My symptoms were mostly anaemia, tiredness, headaches, all over facial rash (dermatitis), mouth ulcers, aching bones. My blood test was highly positive and so was gut biopsy. I had had it for years.

Definately tell her not to stop eating gluten. If the blood test is positive and she is sent for biopsy (mine was about 4-6 weeks later and it was classed as urgent) she actually should eat MORE gluten. I was told lots of bread, pizza etc. If she isn't positive I agree with the above, it could be an intolerence. If she is Coeliac, though, it is better to get the official diagnosis as you get referred to other services; bone scans (50% have bone thinning), dietician, coeliac clinic, vitamin tests etc. and food on prescription and flu jabs (depending on area).

Definately go back if she is in agony though. There are other bowel disorders that can present as such also.

Just to add, the TTG test can often take 3 weeks. It took about this long for mine and other family members to come back (1-3 weeks). Sometimes they have to send it off to other hospitals etc or wait for a batch of them. That's what i was told.

Hey woopsidaisy! (Great name!)

I hope your friend will be ok. I would encourage her to insist upon all the tests and to ask as many questions as she wants and to demand well-rounded answers.

DP was very lucky - private healthcare through work. He lived with his symptoms for all that time but it was only when he was getting migraines daily (and taking strong painkillers every day) and was passing large amounts of blood that I absolutely insisted that he use his healthcare provision.

He had great care and and a fully supportive doctor. He was in hospital for one day for all his tests and got his results straight away. They explained that his gut was just giving up. They showed us the photos of a normal gut and then his gut. They also discussed the migraines etc and explained it was full-blown Coeliacs.

Not all gluten intolerances are full-blown Coeliacs so don't panic.

DP has a new life.

Meal-planning gets easier as you get used to it and eating out is a bit of a nightmare but it is soooooooo worth it for having a fully fit and happy DP.

The long-terms effects of Coeliacs can be very, very bad - leading to cancers etc so it is a good thing that it is now diagnosed so lifestyles can change before that point is reached.

Sorry - meant to add -

Don't change the diet until you know what is wrong.

It may be nothing to do with gluten.

Have all the tests.

Hope she is ok.

Thanks Ooopsadaisy,will pass all that on.
Glad your DH is so much better.