New Here And So Glad I Found This Place!

[Boffin]

Hello everyone! I'm so glad that I found you! I've only had a very brief browse around the site (I am officially at work! ) but already it looks as though it will be really helpful.

I just stumbled across this forum via googling for information about coeliac blood tests. Let me tell you a bit about where I'm up to, if you can bear with me... Basically, I've had GI symptoms on and off for a few years (I'm 30), mostly diarrhea, bloating and wind, and had toddled off to the doctor complaining on and off about these and other symptoms (tiredness etc) for years. My doctor reckoned that it was very likely IBS and nothing more was done. Anyway, earlier this year when I went for my annual allergy review (I have a lot of food allergies - nuts etc) I requested the blood test for coeliac disease as I'd heard of this, thought that some symptoms fitted and though it would be worth checking. Three weeks (!) later I got the result through which read "coeliac serology positive - request confirmatory jejunal biopsy" and that is the stage that I'm now at.

So, I've had a lot of bumpf through from the local hospital, telling me how scary the biopsy is and what risks are involved etc etc and am waiting for an appointment. Meanwhile, I continue to feel rubbish and to eat gluten because I know that it has to be in my diet for the biopsy.

The thing is (trying to get to the point, honestly!) I am wondering how vital the biopsy is?

I've trawled the internet trying to find out the accuracy of the blood tests but with the hindrance of not knowing precisely what blood test was done. From what I can gather (but can't find out definitively) the test most likely to be performed in the UK is for EMA antibodies, and from what I can find out this test appears to be around 95 to 99% accurate and specific. I asked my GP what blood test was done (as my letter didn't say and I know an attachment was included to the doctor but not to me) and he said that it didn't say! In fact, my GP, although very nice, seems to know alarmingly little about coeliac disease generally. He has said to me that although the blood test came back positive that it's probably not all that accurate, especially with my other food allergies (which I didn't think would effect it). On the internet I find far more information about false negatives than false positives though.

Anyway, my GP referred me to a gastroenterologist but on seeing my blood test results that step has been bypassed by the hospital and they've put me straight in for the scary biopsy. The thing is, if it's so likely that they've done that then why is a biopsy necessary? While I wait I continue to eat gluten and therefore (probably) do further damage to myself!

I would be happy to try the gluten free diet to see if it helped without having the trauma of a biopsy. Maybe getting a second blood test might be an idea, also maybe checking for vitamin/nutrient absorption might be useful. The trouble is that as far as I can tell if I go down that route myself it seems that I won't get the back up of prescriptions for gluten-free food, dietician advice, checks for osteoporosis etc etc.

Can anyone offer any advice/suggestions? And sorry for this being such a long post!

[Caeli]

I was diagnosed by blood test 16 months ago after complaining to doctors and being told I had IBS for the past 20 years. My opinion is that most doctors don't have clue about caeliac disease and when they don't have an explanation for intestinal problems they reach for the ubiquitous IBS, which personally I think doesn't exist - it should be titled DDK (Doctor doesn't know) or DNI(Doctor Needs Inservice). Anyhow, enough doctor bashing, I am sure most do try their best!

In regard to the biopsy, here in Australia you can't join the Caeliac society unless you are biopsy confirmed. I had a biopsy of my intestinal villi and was confirmed caelia with near total atrophy of my villi. I still don't fee the best after 1t months but there have been some improvements. My problem is I don't have complete control over m diet as I live in a comunity and we have our main meal prepared. Anyhow, I digress. I didn't feel a thing with my biopsy. In fact, the slight dose of anaesthetic was very pleasant and relaxing. No side effects or complications. Th funny thing is that having come too after the biopsy the nurse fed my gluten ladened sandwiches!! So typical!!

I think hospitals lgally are required to let you know of all he nasty possibilities about biopsies, but in the main I think they are pretty safe. I have had one from the mouth end and a couple from heother end over the years. I think the worse part is fasting and if you have an endoscopy having to be near a toilet while you are flushed through the day before!

Hello everyone! I'm so glad that I found you! I've only had a very brief browse around the site (I am officially at work! ) but already it looks as though it will be really helpful.

I just stumbled across this forum via googling for information about coeliac blood tests. Let me tell you a bit about where I'm up to, if you can bear with me... Basically, I've had GI symptoms on and off for a few years (I'm 30), mostly diarrhea, bloating and wind, and had toddled off to the doctor complaining on and off about these and other symptoms (tiredness etc) for years. My doctor reckoned that it was very likely IBS and nothing more was done. Anyway, earlier this year when I went for my annual allergy review (I have a lot of food allergies - nuts etc) I requested the blood test for coeliac disease as I'd heard of this, thought that some symptoms fitted and though it would be worth checking. Three weeks (!) later I got the result through which read "coeliac serology positive - request confirmatory jejunal biopsy" and that is the stage that I'm now at.

So, I've had a lot of bumpf through from the local hospital, telling me how scary the biopsy is and what risks are involved etc etc and am waiting for an appointment. Meanwhile, I continue to feel rubbish and to eat gluten because I know that it has to be in my diet for the biopsy.

The thing is (trying to get to the point, honestly!) I am wondering how vital the biopsy is?

I've trawled the internet trying to find out the accuracy of the blood tests but with the hindrance of not knowing precisely what blood test was done. From what I can gather (but can't find out definitively) the test most likely to be performed in the UK is for EMA antibodies, and from what I can find out this test appears to be around 95 to 99% accurate and specific. I asked my GP what blood test was done (as my letter didn't say and I know an attachment was included to the doctor but not to me) and he said that it didn't say! In fact, my GP, although very nice, seems to know alarmingly little about coeliac disease generally. He has said to me that although the blood test came back positive that it's probably not all that accurate, especially with my other food allergies (which I didn't think would effect it). On the internet I find far more information about false negatives than false positives though.

Anyway, my GP referred me to a gastroenterologist but on seeing my blood test results that step has been bypassed by the hospital and they've put me straight in for the scary biopsy. The thing is, if it's so likely that they've done that then why is a biopsy necessary? While I wait I continue to eat gluten and therefore (probably) do further damage to myself!

I would be happy to try the gluten free diet to see if it helped without having the trauma of a biopsy. Maybe getting a second blood test might be an idea, also maybe checking for vitamin/nutrient absorption might be useful. The trouble is that as far as I can tell if I go down that route myself it seems that I won't get the back up of prescriptions for gluten-free food, dietician advice, checks for osteoporosis etc etc.

Can anyone offer any advice/suggestions? And sorry for this being such a long post!

[mftnchn]

Welcome to this forum! You have definitely found the right place for a lot of information and support.

I am sure others who have had a biopsy will respond further. I haven't had one, but I understand it is really not a big deal. It is via an endoscopy (which I have had) and was quite painless. I was asleep for the whole thing and it didn't last too long.

Perhaps if you don't need to wait too long, and the expense is okay (not sure the situation where you are, UK perhaps?) you could go ahead with it. If you have both positive blood and positive biopsy, this is the "golden standard" for diagnosis, at least in the USA, and no doctor will dispute it. For some people this seems to make it easier.

I did a stool test through Enterolab, which is not well known in the medical community (Dr. Fine hasn't published on his work)(; it was strongly positive. Since I am not in a place where I could easily get further tests and won't be until early in 2008, I went ahead with the diet. (I'm just 3 weeks into it). I did discuss this all by phone with my allergist who concurred that I needed to strictly avoid gluten and milk (casein). He said the ultimate "test" is the clinical response.

My best to you as you wrestle with this decision.

[WHinNOVA]

I'm three weeks ahead of you. Don't fret the biopsy. You don't feel a thing and there is no pain or discomfort at any point before, during or after.

I'm a huge chicken when it comes to this type of stuff and can honestly tell you that the worst part is the prick from the IV needle. Trust me you felt more pain and discomfort with the blood test and allergy work than you will with the endoscopy and biopsy. You'll take a 5 minute nap and it will all be over. Plus you'll get a day off from work!

In addition to the biopsy confirming / defirming the presence of celiac, the endoscopy process allows the doctor to see how much damage has been done inside your small intestine and look for symptoms of related problems (e.g., damage from acid reflux, stomach bacteria, etc.). Your doctor will be able to tell you what stage the disease has progressed to as a result of the biopsy and this will help tailor what you do later (e.g., need for nutriotional supplements, potential for temporary lactose intolerance, etc.).

The whole procedure is really very simple and this is your health we're talking about. Go get the endoscopy and biopsy. You'll be glad you did.

WH

[Boffin]

Thank you so much for the helpful and reassuring replies everyone. I do so much appreciate it as I've been getting quite frustrated with not having anyone who I could talk to or seek advice about this.

The information about the biopsy not being as scary as I've feared is definately just what I need as I have to admit to being a huge wuss over such things. Just the sign saying "hospital" is practically enough to produce a cold sweat!

It's also good to hear what information the biopsy provides and why it is important. The fact that it will show the stage of the disease is so logical but something that I'd not fully appreciated. As far as I was concerned, the only "treatment" that I knew of was gluten-free diet, but I can now see the value of seeing if supplements and further investigations are needed.

Thanks again everyone, and if you have any further information or advice I'd really appreciate it. I hope to have longer to reply to you all and to explore the forum further at some point but am unfortunately very busy at work today and with the boss lurking not very far away!

Best wishes to you all.

[nora-n]

Here in Europe we get money after an official diagnosis of celiac (coeliac). This is one reason for the biopsy.

The other is to have something to compare with if you maybe (rarely) do not get much better.

And, the risks of tumorsis much greater in celiacs, so it is a good thing they check for those incase of persisting symptoms.

I did meed a woman in hospital with a cancer like that. She c had DH and was celiac and hypothyroid (on thyroxine) and she had an operation, allb ecaause of nonc-copliance or late diagnosis I think.

So it is a good thing to get diagnosed, and good follow-up.

(the nurses a tthe ward did not comment on that all her illnesses were connected..and this was the gastro ward.....)

nora

norway

[Nancym]

I'd say go ahead and have the biopsy but even if it comes out negative try the diet. So many people find the diet clears up a lot of problems.