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monkeypuss

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monkeypuss Rookie
monkeypuss
Posted

hi, some of you might remember me, came on here a few weeks back after i'd had my endoscopy and biopsy for celiacs, just got my results today and it wasn't what i was hoping for. It came back negative, which is so frustrating cos now i'm seriously wondering what it could be making me so ill and also wondering how many more tests and waiting for tests i'll have to go through til i know :/ (been ill for like 5 months now, cant even go to the shops or for a walk cos i feel so bad and it's doing my nut in! not to mention i've gotta completely re-do this year at college and they're being bastards about it)

I dont understand tho, cos i get very severe stomach pains eating gluten, i get really bloated and feel terrible, i also get a rash on my elbows that 2 specialists have said looks like DH (still gotta wait like a month to have a biopsy on it and gotta eat gluten a week before that, but it makes me feel so ill, so i'm thinking i wont bother to have it done). when i stopped eating gluten i was getting abit better after a few weeks of being off it, my nan was celiac and when they looked in my stomach the guy said it was scalloped...so i really thought that it would come back i was.

anyone got any thoughts on this? i ate loadsa gluten and was very poorly before the biopsy on my stomach so i think it should have shown up if i was, and he took 3 little bits to test :/ my blood tests i had back like 5 months ago when i first got ill came back negative for celiacs too but i know these arent always correct..

is there another kind of thing that could cause celiac type symptoms that anyone knows about? i'm wondering if its something else i'm allergic to thats also in things that have gluten...or maybe its gluten allergy?

so confooozed!!! damn doctors!!

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fedora Enthusiast
fedora
Posted

Please remember that you may have caught this before serios damage was done. There could be damage in places they did not check.

The true test is the diet. If the diet works there is your proof. You could do enterolab if you need physical proof.

lizard00 Enthusiast
lizard00
Posted

Hi there, glad you came back!

You said you got better on the diet? How long were you gluten-free and how long did you eat gluten for the endoscopy? I figure you probably want/need a diagnosis for school to let you redo some stuff... but if you feel better off of it, then just go gluten-free. What is your doctor's next move? If you have this pain, and he says it's not Celiac, what does he look for next?

Billygean Apprentice
Billygean
Posted

Hi

I don't really have much advice but can offer some empathy. Mine started with a virus but have basically been bed ridden ever since. My doctor's fobber me off with chronic fatigue but I don't really see how it could explain my host of GI symptoms.

I too can't walk to the shop (dizziness and fatigue is awful!) and I have to repeat my college year. But at this rate I won't be well enough to do so, have made no progress since late jan!

xxxx

monkeypuss Rookie
monkeypuss
Posted
  • Author

was off gluten for like 2 months then back on it for 2 weeks before the biopsy, in which i ate as much gluten as humanly possible (even tho i was only told to eat one slice of bread each day for a week)

not sure of my doctors next moves cos i have to wait another 4 weeks for him to get round to writing to me to tell me properly (ugh), i only found out the results were negative for celiacs cos the skin guy mentioned it as i was leaving..but i've decided i'm not having any more tests!! :P gonna go gluten free and see how it goes for a while :)

*hugs* that really sucks you're missing college too, its so frustrating isnt it :( i've also been getting very dizzy :( i hope you start to feel better soon, seems like so many doctors dismiss stuff or cant explain why people are all so just give up leaving people to suffer for months on end. :(

nora-n Rookie
nora-n
Posted

2 weeks is not enough and I was 5 weeks back on gluten, my daughter 6 weeks. Her duodenum also looked typical abnormal and they took 2 samples and only looked at one.

Latest news is at least 12-15 samples and pubmed.com says 6 weeks to 6 years back on gluten are needed.

Note that they demand marsh 3 for celiac, whereas some places diagnose celiac with increased intraeithelial lymphocytes and symptoms off and on gluten, I read that at alt.support celiac newsgroup some years ago. One can ask to get the slide for a second opinion.

i think the easiest thing to do now is to go for the DH biopsy. Mine was negative because I was off gluten and I had no active outbreak at the time.

A diagnosis for DH is just as good as a positive gut biopsy.

But lots of people report that the DH biopsy turned out negative too in spite of very distinct symptoms off and on gluten. Looks like one has to be lucky there too. It has to be taken on healthy skin close to the rash and during an outbreak.

nora

RiceGuy Collaborator
RiceGuy
Posted

I've read it takes months of eating gluten just for the tests to have even the expected range of accuracy, which we all know isn't so great anyway. So it seems to me that if you had been gluten-free for two months, then only two weeks of eating gluten, the chances of a positive test would be pretty low.

So glad you know that gluten makes you ill, and not to listen to doctors (at least when it comes to gluten). I never even bothered to get any tests, and have absolutely no intention of doing so. The diet is the best test, and I trust what my body tells me.

I hope you get your college stuff straightened out too. It's so often such a waste as it is, without having to redo any. I know someone who was on the last year, and the stupid school lost his records - didn't even know who he was or that he had been attending, so he had to start all over!

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splash Rookie
splash
Posted

I tested negative on both blood test and gene test (I didn't even bother putting myself through the biopsy) but I have severe reactions any time I eat gluten, and the gluten-free diet after one year has changed my whole life. My genetic test showed that I have double DQ1, and apparently DQ1 in some countries is associated with gluten intolerance. They don't call it celiac if it's DQ1, which never made sense to me, but the point is that gluten is bad.

It's tough at first but lots of people are becoming more familiar with gluten so you can find plenty of yummy food, and if you want to avoid eating one or two little ingredients out of the millions of edible things on this Earth, I say you should be free to do that. No matter what disease you have or don't have. In another few years it will be like saying you can't eat peanuts or shellfish so stick to your guns - listen to your body and don't eat it if you don't want to!

splash Rookie
splash
Posted

PS I have been seeing a nutritionist, who has been a godsend to help me straighten out my symptoms and know how to listen to my body. It's the kind of help that doctors just don't know how to give. If you're in the DC area check out www.eatinpeace.com - Charlotte really knows what she's talking about and is a total angel!

BelievinMiracles Explorer
BelievinMiracles
Posted
was off gluten for like 2 months then back on it for 2 weeks before the biopsy, in which i ate as much gluten as humanly possible (even tho i was only told to eat one slice of bread each day for a week)

not sure of my doctors next moves cos i have to wait another 4 weeks for him to get round to writing to me to tell me properly (ugh), i only found out the results were negative for celiacs cos the skin guy mentioned it as i was leaving..but i've decided i'm not having any more tests!! :P gonna go gluten free and see how it goes for a while :)

*hugs* that really sucks you're missing college too, its so frustrating isnt it :( i've also been getting very dizzy :( i hope you start to feel better soon, seems like so many doctors dismiss stuff or cant explain why people are all so just give up leaving people to suffer for months on end. :(

I feel your pain!! I really do, I've been suffering for 2 years now and I have had every test possible, diabetes, endoscopy, colonoscopy, cat scan, blood test, urine tests, poop tests and everything comes back neg. It gets to the point to where I feel like I'm a hypochondriac and that I possibly may be making this all up in my head...it sucks majorly. I've been trying the gluten-free diet but I kind of suck at it and tend to always accidentally eat gluten...so we'll see how this works out.

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