Had endoscopy, but no diagnosis

[blackbird]

I did think that after the endoscopy I'd have some idea about what's causing my rash. But obviously here in the UK it's not how they do things. There were a lot of patients in the room, all waiting to have the procedure - I waited over two hours in the prep room - not a good thing for someone as nervous as I was (and friends and relatives were not allowed in).

I've posted elsewhere that the procedure was not as scary as I'd imagined, so that was a real blessing. The doctor who I've been seeing, and trusted, was off sick, so a doc I'd never seen before did the procedure. He came and introduced himself beforehand, and I assumed he would give me the results after the thing was over.

When the nurses decided I was ready to go (I felt fine, and had a drink and biscuit), a nurse took me and my companion, who had arrived to take me home, into a room to go over the results. He told me that I have gastritis and a hiatus hernia. This was quite interesting as I didn't realise I had either, but the rash - that was my real reason for having the endoscopy. I was told the doc did a biopsy but the results would be a couple of weeks and would be sent to my GP. But, I asked, I was told the doctor would be able to see if the villi were normal when he looked at the camera in my gut. Apparently this doctor didn't make any comments about this and the nurse could only suggest I wait till the results of the biopsy.

So I'm back to square one. I've still no idea what this rash is, and whether it has any connection with the diarrhoea I've had for so long. I've made an appointment to see my family doctor this afternoon, to see if she can suggest anything for the itching, which has never been quite as bad as it was a couple of nights ago, but still keeping me awake at night.

I really thought by today I'd be coming here asking for tips and advice about DH and coeliac in general - or saying goodbye because this isn't my problem. Instead I'm stuck in this no-man's-land. So I'll keep checking in here till I find out the biopsy results. Incidentally, are these results totally reliable - if they say Normal, can I forget about CD and start to look elsewhere (my blood test for CD was normal)?

So, bye for now - and thanks for all the support I've received.

[nancw]

I believe that a DH biopsy is taken from the skin immediately adjacent to the lesions on your skin. The intestinal biopsy is to check for villious flattening related to damage from gluten or other sources.
Have you had a skin biopsy?

Glad you survived the EGD.
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Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[cruelshoes]

The doctor will only be able to give you his observations about what the villi look like with the naked eye. Often the damage to the villi is only evident on a celular level. So even if the villi look normal on the surface, the pathologist reports can come back with a positive result for celiac.
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-Colleen

Where are we going, and what am I doing in this handcart?

[rpf1007]

My dermatologist took biopsies from a blister and immediately adjacent to a blister.
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Rachel

[rpf1007]

Blackbird- will they do a skin biopsy of your rash? Have you been able to be referred to a dermatologist or are you only with your GP for the rash? I'm not sure how easy it is there to be referred to a dermatologist- but you may want to give it a shot. If nothing else and it isn't DH, the dermatologist might be able to better figure out what it is. My brother lives in the UK and he says that it is tricky to get referred. His GP refused to do a celiac test for him (he asked about it because I was recently diagnosed) because he had no GI symptoms.
Good luck!
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Rachel

[blackbird]

Rachel - I've realised from reading through these posts how different the procedures are in the UK and the US. My gastroenterologist has been seeing me for a few years with severe diarrhoea which they put down to some surgery I'd had. The diarrhoea has really impacted on my life - I have to plan every journey with public lavatories in mind as I only get about 2 mins notice when I need it. I'd had a routine blood test for coeliac which was normal. It was only when I developed the rash that the gastro decided to do the endoscopy because he thought the rash could be DH which would I suppose mean the diarrhoea would be CD. I had already noticed indigestion after eating wheat. They have taken a gut biopsy, and I suspect if that is normal then that will be the end of that matter. I very much doubt they would do a skin biopsy - I laugh when I read of American patients ringing their doctors and asking for tests! That just doesn't happen here.

My GP had a colleague in to look at my rash yesterday. He was quite scathing about the DH investigation, and said the rash was nothing like DH. He said it was a severe outbreak of eczema, and has prescribed prednisolene (?) steroid tablets. I'm hoping that taking these won't mess up any further investigations the gastro might decide to do.

I'm at a loss - I'd never thought I had CD until the gastro mentioned it (tho I had wondered if I had a wheat allergy). The rash has been worse than anything I've ever had before, tho after the one night when it nearly drove me mad it does seem to be subsiding slowly. We do have a family history of bowel lymphomas, of unknown cause, so I'm just a bit anxious to get to the bottom of this, but like your brother I have to wait for the doctors to make the decisions.

I wish it was possible to get the biopsy done privately without the doctor knowing, but I don't think this is possible. However, your brother could buy a CD home testing kit - I think from Boots the Chemist - which is said to be as accurate as the one the doctors do.

[ostrich]

[rpf1007]

I guess I was really lucky- but then my rash was pretty much classic. The dermatologist took one look at me, listened to my story and the first question out of his mouth was if Celiac disease ran in my family. He said he was 99% sure that's what it was but we could do a biopsy to be sure. At the time I wasn't totally convinced it was necessary- but now I'm so glad I just said ok.

I'll let my brother know about the test at Boots- thanks!

It doesn't sound like the doctor that looked at your rash was really interested in a biopsy? Did you ask about it by any chance?
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Rachel

[blackbird]

Ostrich - my youngest son who has quite severe asthma said exactly the same thing about steroids. To be honest, the itch has been such a nightmare I'd have taken anything I was offered, but I will certainly take notice of your warnings. I don't intend to take these tablets forever - just to get me over this crisis. They have given me a steroid ointment as well, but I'll now use this very sparingly.

The doctor who looked at my rash was absolutely certain it had nothing to do with DH. End of conversation. He decided it was eczema, and had no intention of questioning his own diagnosis. He gave me a withering look when I mentioned CD, so I didn't dare suggest a biopsy.

I'll get the results of the gastroscopy biopsy in about ten days. However, my next appointment with the gastro is not till March. I expect (hope?) the rash will have gone by then. I think if the gut biopsy is normal the gastro won't take the investigations further. However if I still have the rash by then (or if it comes again at a later date) I will press for a biopsy.

Ostrich, did the steroids help your DH?

I'd assumed that by now I'd have known one way or the other. I don't WANT CD or DH but I would like to know so I could do something about it. I'm glad I found this forum to talk about it, though. I've appreciated all the answers I've had.

[ostrich]