just after a little help... again - Eosinophilic Disease

08-10-2009, 08:56 AM

hi again,

i've posted a couple of times on here, both those times before i had my endoscopy. when i woke up they gave me some results straight away, that my digestive system was inflamed - they also said they couldn't see any villi. they couldn't give any reasons to why no villi showed up but they said it could possibly be the inflamtion covering it up.

they told us to wait for the biopsy results - they said inflamtion [or whatever is causing the inflamtion] was deffinitely what was giving me the symptoms and they were almost certain its something treatable. this gave us great hope and i could finally breath a sigh of relief after suffering so long! they said it could be anything but they suggested an allergy but did tell us they wouldn't know until they got the biopsy results back.

they told us the results would be with us in 4 - 11 days. 2 weeks we rang as we hadn't had any results. they said the results were faxed through to my doctor over a week ago. so we rang the doctor [well, secretary], who said she'd have a word and someone would ring us back.

we didn't get anything in depth, just "a bit inflamed but all normal". and thats the only information we have

we phoned back the hospital and my consultant up there said the same - and that we should wait for a followup to discuss things - not sure how long a follow up will be, but it usually takes around 3 months which i really dont want to wait for! i'm now 17 and at a paediatric hospital so besides everything else, i'm also worried they're gonna kick me out anyway soon after the followup so will be stuck again.

they haven't said what was normal just that it was normal. [presuming the biopsy's].

i'd like to go in with a bit of know-how, as they do tend to fob you off, so i'd like to know a little bit of whats going on and what has happened. i was just wondering what biopsy's they would have taken? is there any basic general biopsy's and what they are for? also would like to know - for these biopsy's if i ask to see them - what's normal and what's not?

i really am clutching at straws here - but after 4+ years [i've had digestive symptoms and difficulties all my life but they've ruined my life the most over the last 4 years and been most severe] you do clutch at straws. there seems to be sooooooo much that can cause digestive system symptoms its untrue!

but i've come accross this illness; Eosinophilic Disease. I'm not saying I have it - I'm just clutching at straws. But would like it looking into and know about it a little bit. I get nausea, choking/inability to swallow, constipation, stomach cramps, acid reflux, blood and mucus when I go to the toilet, loss of apitite and feeling sick and full alot even when i have not eaten. i've lost alot of weight and really struggle to eat. these are all symptoms written, along with the fact that its shown inflamtion and also my doctor says i have signs of allergies. another thing is that i have been told on a few occasions i have a high white blood cell count.

it says this illness is diagnosed with an endoscopy - which i've had. it says high white blood cell count in the blood or digestive system.

is it usual/likely that they tested my white blood cells in my scope?

what's niggling me, because i can't seem to find it anywhere online is what is "normal" - do i have the right to have a look at my results myself so i can go through them? sometimes we have to nag and nag for results and then still just get told the word "normal" - many times, not even knowing what has been tested for and every time not knowing what is normal. and i know i'm just paranoid and wishing that theres been something they've missed so that i can get this stupid problem sorted out but sometimes i feel like they're just fobbing me off anyway.

i think thats everything. i know its a reaaaal long shot, but i just came accross it and could relate to alot of the things so thought theres no harm in asking on here

thanks guys!
x

08-10-2009, 09:58 AM

Just a question - have you been tested for food allergies? Am asking because you said that the doctor had mentioned allergies at one time and because I know that elevated eosinophils can indicate allergy issues (learned that when my cat was having digestive issues and they rane blood work on him and that's all that came back out of line - and he does have allergies to grass and pollens)

08-10-2009, 12:24 PM

hey! thanks for the reply.

i had blood tests for allergies which were all clear. i'm not all that sure on allergies, but when the doctor rang [she left a message because we weren't it] she just said "inflamtion which suggests allergies" - but thats all? on the consultation before i had it done she said the test will only show if i might have allergies but will not show what the allergies are. thats all i can tell you as far as allergies go.

she did say though before the scope she was leaning towards allergies that were causing my symptoms.

08-10-2009, 02:00 PM

Hmm...there is testing that will show which foods. Perhaps you should see a different doctor.

08-10-2009, 02:26 PM

this is the millionth doctor i've seen lol.

my paediatricians answer to everything is "i don't know whats going on - i dont have a chrystal ball", my first gastro told me to eat more and stop taking my anti-emetics. so we paid private to see someone else at great ormond street [which is supposed to be one of the best hospitals in the world]. she was soooo lovely if im honest and she is actually the only person who listened to my symptoms and took interest. she first put me on gluten, eggs, soya and dairy free diet and it didn't work so she arranged for an upper and lower scope [also i cut out msg last year so that has been cut out too and i felt no better after that].

i don't really know where to turn next. i dont really want to keep changing doctors forever more. the current one im seeing is very nice though and shes the only one who seems [well at least she did at first - not sure im still getting the same vibe off her anymore] to want to help me.

08-11-2009, 05:39 AM

It sounds like you need to see an allergist....

08-11-2009, 06:44 AM

never heard of one of these - how would i get to see one? i've seen a dietician and shes the person who put me on the special diet but like i say, it didn't seem to make any difference

i've done a food diary and there doesn't seem to be any pattern - i just get ill whatever i eat!

08-11-2009, 07:12 AM

Not sure how you go about seeing an allergy doc over there. How do you find any kind of specialist? I would guess your general doctor would be able to set you up with one.

And the elmination diet you did can be helpful but there is a food specific blood test as well. Perhaps it isn't used much in the UK?

08-11-2009, 11:00 AM

thanks - i guess i will have to mention it to my gp

i've had the blood tests for various different allergies and the "pin *****" tests - but they were all clear.

08-12-2009, 08:08 AM

OK, now i'm confused. You indicated you had a blood test for food allergies but that it did not show specific foods to which you are allergic - just that you have some food allergies. If that is correct, then there are blood tests here in the US that test for specific food allergies that will tell you what food you are allergic to. Perhaps they don't do them in the UK. The scratch tests - at least here - are usually done for environmental allergies (dust, ragweed, pollens, etc) althought hey can be done for other allergens. It's just that here int he US it's usually blood tests for food and skin scratch test for environmental.

08-12-2009, 11:18 AM

noooo - the ~blood tests i had, they were for specific foods, the stomach allergy tests [biopsys] thats what they said would only show if i had an allergy, not what it was. i've had both the allergy blood and scratch tests about 3 years ago and i had the biopsy and scopes [which tested for allergies in my stomach] just over a month ago

hope that makes sense - sorry to confuse!

just after a little help... again - Eosinophilic Disease

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