57 replies to this topic

[VeggieGal]

Hi all, I had two blood tests which both tested positive for the antibodies (don't koiw results or the tests they did). I went gluten free for 4 weeks and felt like a different person but then my dietician told me I had to eat gluten again for the biopsy. Ive been trying to eat it and feel worse than ever (can't understand that!). Do I really need the biopsy? I can understand having a biopsy if id had negative bloodwork but surely I cant have a false positive? (or could the blood results mean its something else?).

Reason im scared of having a biopsy is i had a total thyroidectomy recently (graves disease), and surgeon cut a vocal cord and ive only just got my voice back but still using only using one cord) im frightened of further damage.

I get the impression its all about money, because if im 'diagnosed celiac' then il be entitled to free prescriptions for bread etc. I just want to feel well again.

[guest134]

Well, false positives do happen but I think in your case we can forget about that, you are obviously getting sick after eating gluten and if that does not show celiac I don't know what does.

A biopsy to confirm celiac would be beneficial for a few reasons, one would be the tax breaks people with celiac get, two you can't ever get drafted into war but you are a girl so I don't think you would have to worry about that anyway, three they are expecting a cure as early as 2017 and really no later than 2026, these will only be made available to officially diagnosed celiac patients. Also in terms of having your disease being taken seriously, and not having doctors roll their eyes at you for being self diagnosed.

Never heard of an endoscopy interfering with your vocal chords, and yes you need to be eating gluten or you will be false negative.

[tom]

...and yes you need to be eating gluten or you will be false negative.

Whoa not so quick! Tissue damage doesn't heal overnight or even quickly. You may be thinking more of antibodies?

[VeggieGal]

Thanks for the reply... Im actually in the UK so not sure if id qualify for a tax break. So if there can be a false positive on the bloodwork, does that mean its more an intolerance than celiac? Or is the test not specific to celiac and therefore could i be looking at yet another autoimmune disease? All very confusing

[tom]

Oops I was too slow to get this in before your new post . ..

Hi all, I had two blood tests which both tested positive for the antibodies (don't koiw results or the tests they did). I went gluten free for 4 weeks and felt like a different person but then my dietician told me I had to eat gluten again for the biopsy.
...

I'm not sure I understand the situation. A dietician is involved w/ an endoscopy/biopsy?

You already have a positive dx.
An endoscopy/biopsy isn't diagnostic at this point, as that ship has sailed, but it's still certainly valuable to have a GI have a look.

I think the dietician is confused & that if the Dr *doing* the biopsy thought you needed to continue the challenge you would've been instructed so by the Dr.

With pos bloods & response to diet, if the biopsy finds nothing, the story would be either "phew, stopped gluten before damage" or, more likely, "dang, missed grabbing a damaged piece because it's spotty damage that isn't seen w/ naked eye".

The endoscopy is still worthwhile, but you're already dx'd celiac.
If I were you I'd stop the gluten immed & if I saw the dietician again I'd ask if they knew I already had positive bloods.

Damaged tissue doesn't heal overnight, and every time someone asks "it's been a month, why aren't I all better by now?", they're told "be patient, it takes time for the damage to heal".

Be gluten-free & get well! Good luck VeggieGal

[nvsmom]

It is possible to get a false positive but it's not very common. If you have a few tests that are postive, that make sit much more unlikely that it's a false positive. The EMA IgA is (I believe -I'm not medically trained though) is extremely specific to celiac so if you had that test, plus another positive, then in my opinion it's pretty likely that you have it.

The tests would not indicate a gluten intolerance versus celiac. At this time, I don't think there is a test that shows intolerance. Most celiac blood tests show antibodies that damage the intestines in a response to damage that has been done (as I understand it). The damage could be from another source such as e.coli or another intestinal AI disease but it's not usually the case.

If you can get your tests and post them here, along with the results and the normal range, there are some very well read people around here who could offer you more advice.

And just as an aside, some doctors diagnose celiac without the biopsy now a days... mine did but I'm not sure if it's because he's progressive or just lazy. LOL

[tom]

Thanks for the reply... Im actually in the UK so not sure if id qualify for a tax break. So if there can be a false positive on the bloodwork, does that mean its more an intolerance than celiac? Or is the test not specific to celiac and therefore could i be looking at yet another autoimmune disease? All very confusing

The tests are certainly specific enough when 2 come up positive.
You have celiac disease.

[guest134]

Tom, I just want to make sure she at least has every possibility of an accurate diagnosis and some people do heal a lot quicker than others, especially depending on how much damage there was. It is like having someone with a endomysial of 1:10 vs 1:3250, you can tell who is going to heal quicker.

Tax breaks are in the UK as well. http://www.coeliac.org.uk/

The University of Chicago Celiac disease centre predicts that as much as 3/4 Tissue transglutaminase results can be false positive. This however is once again in certain population samples. The problem with TTG is it is not 100 percent specific to gut damage caused by celiac, it can be elevated in cases of infectious disease (e coli, salmonella etc). This however is associated with low level positivity, if you are a lot higher than the normal range (at least triple) it is almost certainly celiac. Can you show us your test results?


"What’s the problem with diagnosing celiac disease simply by measuring the decrease in antibodies once someone switches to a gluten-free diet?

The con is that you’ll never know if a patient truly has celiac disease versus other causes for elevated antibodies. tTG are thought to be 97-98% specific, but by definition this means that 3 in 100 persons who don’t have celiac disease will have elevated tTG (biological variations, nothing more). If you consider that celiacs are 1% of the general population, it follows that out of 100 persons tested for tTG: 1 has celiac disease and 3 do not. This could mean that only 1 out of 4 of those with positive antibodies will have celiac disease as the cause. This is why you need a biopsy to confirm it." http://www.curecelia...luten-free-diet

[guest134]

And once again I will stress that your tests are very unlikely false positive, you get sick after eating gluten, seems obvious to me.

[tom]

...
This is why you need a biopsy to confirm it."

I wholeheartedly disagree - and there is a growing movement to dx by pos bloods & skip the biopsy. (As referenced above)

It'd be ridiculous to say "well it's not celiac then" just because the right spots weren't biopsied. You don't really think a UofChi Dr would do that, do you?

[Celiac Mindwarp]

Hi
I am in the UK too. It seems to vary between doctors here whether they will diagnose with just blood tests, or insist on biopsy.

If you are diagnosed by biopsy you should get access to gluten-free food on prescription, though some areas are cutting back on this.

If you are going to have a biopsy you will need to be eating gluten beforehand. I only lasted 3 weeks on a gluten challenge so can't get a full diagnosis.

Maybe try talking to your doctor, see if they will diagnose on blood tests alone. Perhaps your hospital has a cancellation list so you could get it over with. The standard recommendation here is 6 weeks with at least 1 gluten containing meal a day (though you will find a wide and confusing range of other advice around!!)

Many folks here are diagnosed with either blood or biopsy, some of us self diagnosed. Your response to diet probably tells you what you need to know.

Information from the biopsy can be useful anyway.

Good luck, ask questions

[1desperateladysaved]

Coming from a supersenstive and long term battle background, I would say that if you know you can't tolerate gluten, don't eat it. I was diagnosed by changes when going gluten free and a genetic test. I now found out by a nutrition evaluation thatI have damage that might be from celiac, aloholism (I don't drink), or parasites. In other words we are turning up some more measurable evidence. I would try tests that will be constructive for you like nutrient absorption and food intolerance tests.

Most of all I hope you will recover fully and be well. Then I hope whatever tests you get will give you helpful information.

Diana

[shadowicewolf]

I scored positive on the IGA TTG and on the genetic along with positive reaction to the diet, the rest of the blood tests were negative as well as the biopsy (taken 4 weeks gluten free). As far as i'm concerned, i'm happy with it.

It really depends on what you wish to do. The result will be the same either way.

[GottaSki]

Welcome veggiegal!

I'm with Tom in this scenario. There is no reason to keep ingesting gluten once your blood is positive - just make sure you've had a complete celiac antibody panel than remove ALL gluten.

I would highly suggest the endoscopy though - there is much information to be learned from the procedure and this info may become important to you in the years to come.

Hang in there

[VeggieGal]

So glad I found this site...thanks all.

My GP won't properly dx me without a biopsy confirmation as its very costly to nhs due to free prescriptions (her words).

I only saw the dietician once purely to inform me what celiac actually is and tell me I must eat gluten pre-biopsy.

Its good to know about the tax break ..something good anyway.

The reason Id like a proper dx is 1) so i take it seriously and dont try cheating, 2) so my family take it seriously and get tested themselves, and more importantly...
3) I'm currently taking levothyroxine which doesnt agree with me ..I think its either the lactose or corn or something...its very cheap and my GP won't even let me try the syrup version until i have a proper dx because its expensive.

I will try and get blood results but its like pulling teeth getting info from them ! thanks again

Edited by VeggieGal, 29 November 2012 - 09:11 AM.