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Gastroenteroly appointment next week. Stressing

(11 Posts)
Pleasemrstweedie Fri 24-Jun-16 14:37:31

I have now tested negative for coeliac disease twice, once in 2009 and once in March this year. No further testing will be offered. As I still had symptoms when I saw him in March my GP referred me to Gastroenterology and my appointment is next week.

After my gluten challenge and negative test in March, I removed all wheat, and then rye and barley from my diet. Result, no more symptoms, no more skin rash/infection, no more random sudden onset episodes of uncontrollable diarrhoea.

However, it’s not quite that simple. I can actually eat some types of bread. For example, sourdough seems to be fine, but white sliced provokes a reaction. I can drink some brands of beer quite safely, but not others. DH and I think the problem is not necessarily the grain, but more likely a chemical used in production and, as I don’t know without testing what I can eat/drink and what I can’t eat/drink, it’s very much guesswork and has resulted in some unpleasant ‘accidents’.

I also think this is part of a wider allergy/intolerance picture because I also have other symptoms. Someone came into where I work yesterday to drill a hole in the wall and I was sneezing all the time he was doing it, until my nose bled. Air conditioning has the same effect – every time. Household cleaners make me choke and retch, some foods bring me out in a rash and so on. This is happening on a daily basis.

I’ve asked repeatedly for a referral to an allergy clinic, but have been refused twice on the grounds that there is not enough evidence, so for the time being, I’m stuck with the gastroenterologist. Does anyone have any experience of this sort of situation? Is it likely that he will understand my position, or am I likely to just get stuck in a protocol. The team leader’s speciality is endoscopy as a diagnostic in disease of the oesophagus, which seems quite irrelevant to my situation.

I'm really stressing about this now. How can I ensure I get something out of it? Are there any buzzwords I should use, anything I need to know?

Thanks

Pleasemrstweedie Sun 26-Jun-16 14:58:50

Anyone?

livinginabox Sun 26-Jun-16 21:27:52

I have coeliac disease which was diagnosed by endoscopy. My blood tests have always been negative. It's the gold standard for CD diagnosis anyway, so good you have been referred as it sounds like they are taking it seriously.

Pleasemrstweedie Mon 27-Jun-16 13:30:47

That's interesting. The GP said that as I'd tested negative twice, that was a dead end and no further testing would be done.

Having had a very bad experience with our local hospital, who failed to diagnose me with another condition, despite having 14 chances to do so over a four year period, I'm just afraid that this appointment will be a waste of time and I will get no clarity from it.

Pleasemrstweedie Fri 01-Jul-16 16:35:56

So, I went for my appointment and spent less than ten minutes with the consultant.

He took no history, asked nothing about my symptoms and just couldn't understand why I have stopped eating wheat when I have been told twice that I am not coeliac. He just didn't get that cutting out wheat (and rye and barley) has fixed my symptoms.

The protocol calls for colonoscopy, so he's referred me for that and said if it's clear, as he expects it will be, then it's just my IBS getting worse.

I am stunned, saddened and extremely stressed. I don't know whether to have the colonoscopy or not. It seems like a bit of a palaver if I now have no symptoms,

Don't know what to do,

macy188 Fri 01-Jul-16 22:18:55

Hi there, I'm having similar problems and was convinced I had celiac as it run in my family but bloods were negative. Had samples done for H pylori and traces of blood for inflamitory bowel and colitis but just found out they were negative too. So I'm getting booked in for a camera to have a look around and see what's going on! At least it it is celiac that's not shown in my bloods, they find it.

Was it because you'd stopped eating gluten before tests? It can come back with negative results if you cut back eating it before testing. Obviously if you're felling better you'll cut it out! X

Pleasemrstweedie Sat 02-Jul-16 10:59:10

I was eating gluten before both tests. In fact for the second test I made sure I had lots of gluten, so I had, not only episodes of diarrhoea, but also fatigue and hot swollen joints and a skin rash. I cut out the gluten after the test to see what would happen, and they've all gone, within about two weeks.

I was surprised when the result came back negative.

A colonoscopy won't find coeliac anyway as I understand it, I thought you needed endoscopy for that to look at the villi in the small bowel.

macy188 Sat 02-Jul-16 15:57:11

What's a colonoscopy then? Sorry I'm new to this! Lol.
Did they take a biopsy of the rash?

Pleasemrstweedie Sun 03-Jul-16 21:16:59

Camera uphmm

No biopsy, well, I haven't got the rash now anyway..

Katymac Sun 03-Jul-16 21:24:19

I've had 3 blood tests all negative, 2 colonoscopies with biopsies both negative then non coeliac gluten intolerance was suggested

However Vit D B12 & high dose zinc (gluconate) has helped massively along with acuuncture

Gastro simply gave my symptoms a name "very fast transit time" rather than trying to fix it

macy188 Sun 31-Jul-16 13:43:03

Well after going back and forth to the doctors, I've been referred and will be getting an appointment for a colonoscopy. He said he will make a note to go right up to my small bowel and take biopsies for celiec testing. In the mean time I've been put back on antidepressants incase it's my anxiety causing ibs. I had been on them for years and came off a few months ago due to a pregnancy (which I lost) so he thinks it could be stress induced which I agree. He did also say that the celiac blood tests are not accurate at all!

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