Blood Tests Positive..do I Really Need A Biopsy?

[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]

  On 11/29/2012 at 2:40 PM, toworryornottoworry said:

...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 . ..

  On 11/29/2012 at 11:27 AM, VeggieGal said:

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]

  On 11/29/2012 at 3:14 PM, VeggieGal said:

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. Open Original Shared Link

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." Open Original Shared Link

[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]

  On 11/29/2012 at 3:40 PM, toworryornottoworry said:

...

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

[luvs2eat]

I was diagnosed w/ highly positive blood work. My GI doc said an endoscopy was absolutely not necessary. I did have one a few years later for other issues but I went gluten-free on the blood work.

[Gemini]

  On 11/29/2012 at 11:27 AM, VeggieGal said:

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.

Hi VeggieGal!

You have received a lot of advice here and I think Tom has given you enough good responses to support your decision of not having an endo. I declined the endo also because I was too sick to have one and I also have Sjogren's Syndrome, an associated condition of Celiac. It makes your eyes and mouth extremely dry. I am super protective of them because I have heard of too many mistakes made during procedures to want to go there. I can't even swallow bread without washing it down with water so no way was I going to have them do an endo.

I understand your anxiety completely!

I had positive bloodwork and failed the whole panel, positive gene testing for the main celiac gene, and a phenomenal response to the gluten-free diet. That is a diagnosis. You have had 2 blood tests and a positive response to the gluten-free diet so you have a diagnosis also. You also had Graves Disease and the thyroid is particularly prone to destruction with Celiac Disease. They seem to go hand in hand for many.

Forget about basing diagnosis on cures, as was mentioned earlier. I have my doubts that any in the medical profession can find a way to trick the immune system into not responding to gluten. It's nice of them to try, but even if there was a cure tomorrow, I doubt I would ever touch gluten again. The diet is not hard and why would anyone eat something that you are genetically predisposed to not be able to digest, which wreaks havoc on the body? I have been to the UK many times and never had a problem eating there or finding good food. You have Genius bread...God Bless that woman who started the company! Unless you are that tapped for money, you will not need the Rx food that you can get from the government.

The stuff in your stores is far better.

You can always have an endo later if you do not recover well or have problems still after being gluten-free for awhile. But do not obsess about that....you will heal if you follow a strict diet. Think positive, lady....you'll be fine. I was totally malnourished and a mess when diagnosed and I am doing great today! Good luck to you!

[GottaSki]

One more thought VeggieGal-

While I do think you can remove gluten now - if you decide to remain on gluten for an endoscpy - there is no need to overdo it. A slice of glutenous bread is sufficient - some have found it a bit easier to ingest it in the evening to avoid some of the symptoms - this won't prevent symptoms - just may help a bit.

[tom]

  On 11/29/2012 at 4:58 PM, Gemini said:

Hi VeggieGal!

You have received a lot of advice here and I think Tom has given you enough good responses to support your decision of not having an endo.

...

I called the endoscopy valuable & worthwhile, for the record.

My point was that dx already happened & more gluten isn't necessary now.

[Gemini]

  On 11/29/2012 at 5:24 PM, tom said:

I called the endoscopy valuable & worthwhile, for the record.

My point was that dx already happened & more gluten isn't necessary now.

I know how you feel about endo's, Tom. That's fine. I just think they are over-done today and not always necessary, especially since she had a medical error done by a previous doctor.

I think if you do not need one for diagnosis, the decision to have one can be made later, if you are having any problems. I have never needed one and will not have one unless needed...it's just too invasive.

[nvsmom]

  On 11/29/2012 at 4:42 PM, VeggieGal said:

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.

It is possible that levothyroxine has some gluten in it. Synthroid is gluten-free, although they won't guarantee it (for legal reasons I'm guessing).

I am going through a similar problem with synthroid right now. I am hoping my doctor will switch me to armour or Naturethroid because almost all of my hypothyroid symptoms have become worse since starting Synthroid. I'm not sure if it's the synthroid or just lack of T3 but switching to a natural dessicated thyroid will take care of both of those possibilities.

Are you on any T3? The thyroid makes T3 too, although many doctors dismiss that fact and say that our body should convert T4 to all the T3 we need... which isn't the case with everyone. As far as I know, your free T4 and free T3 should be in the upper half of the normal range (at about 75%) for most people to feel well.... but I am not medically trained and fairly new to thyroid issues myself.

Best wishes. I hope you continue to recover well from your surgery... I'd be nervous about the biopsy too I think. (hug)

[VeggieGal]

  On 11/29/2012 at 5:34 PM, nvsmom said:

It is possible that levothyroxine has some gluten in it. Synthroid is gluten-free, although they won't guarantee it (for legal reasons I'm guessing).

I am going through a similar problem with synthroid right now. I am hoping my doctor will switch me to armour or Naturethroid because almost all of my hypothyroid symptoms have become worse since starting Synthroid. I'm not sure if it's the synthroid or just lack of T3 but switching to a natural dessicated thyroid will take care of both of those possibilities.

Are you on any T3? The thyroid makes T3 too, although many doctors dismiss that fact and say that our body should convert T4 to all the T3 we need... which isn't the case with everyone. As far as I know, your free T4 and free T3 should be in the upper half of the normal range (at about 75%) for most people to feel well.... but I am not medically trained and fairly new to thyroid issues myself.

Best wishes. I hope you continue to recover well from your surgery... I'd be nervous about the biopsy too I think. (hug)

Well I dont have a thyroid anymore and Im just on T4..my endo says levels are fine and he wont entertain testing for reverse T3 so thats another issue!!!

Ive emailed mercury pharma who manufactures the levothyroxine and they were helpful and guaranteed me it doesnt contain gluten which is why I suspect the lactose as milk and cheese disagree with me too. well being in the uk i doubt il get access to the natural dessicated but if i get a dx on celiac they said they may try me on the syrup (

[Gemini]

  On 11/29/2012 at 5:34 PM, nvsmom said:

It is possible that levothyroxine has some gluten in it. Synthroid is gluten-free, although they won't guarantee it (for legal reasons I'm guessing).

I am going through a similar problem with synthroid right now. I am hoping my doctor will switch me to armour or Naturethroid because almost all of my hypothyroid symptoms have become worse since starting Synthroid. I'm not sure if it's the synthroid or just lack of T3 but switching to a natural dessicated thyroid will take care of both of those possibilities.

Are you on any T3? The thyroid makes T3 too, although many doctors dismiss that fact and say that our body should convert T4 to all the T3 we need... which isn't the case with everyone. As far as I know, your free T4 and free T3 should be in the upper half of the normal range (at about 75%) for most people to feel well.... but I am not medically trained and fairly new to thyroid issues myself.

Best wishes. I hope you continue to recover well from your surgery... I'd be nervous about the biopsy too I think. (hug)

I know that the levothyroxine in the US is gluten free but not sure about the UK. I used levothyroxine for a long time before switching to Nature-throid because I needed the T3.

I never had a problem with it, other than it didn't have any T3. That is a good point, though!

[Gemini]

  On 11/29/2012 at 5:50 PM, VeggieGal said:

Well I dont have a thyroid anymore and Im just on T4..my endo says levels are fine and he wont entertain testing for reverse T3 so thats another issue!!!

Ive emailed mercury pharma who manufactures the levothyroxine and they were helpful and guaranteed me it doesnt contain gluten which is why I suspect the lactose as milk and cheese disagree with me too. well being in the uk i doubt il get access to the natural dessicated but if i get a dx on celiac they said they may try me on the syrup (£100 a bottle so they'd rather not!)

I will ring GP tomos and try and get bloodwork.

Thanks so much to everyone for all this valuable info.

The tests they need doing are the free T3 and free T4.....really, the whole thyroid panel should be done each and every time you are tested. Americans have to also find doctors who will do this as our system does the same annoying thing. They get cheap with testing and cheap with prescriptions, to the point of extreme annoyance. It's all about money and not enough about our well being. I think that because you do not have a thyroid gland anymore, you really need to add some T3 in there.

Do you have any alternative medicine docs you could go to? I know there are plenty of private physicians who work outside of the NHS but it's probably expensive. This really isn't right..... I go to an alternative MD because I just could not get the right help from an endocrinologist. They are notorious for not doing complete testing and under-medicating.

[guest134]

I feel the need to state once again, I do think that she has celiac (well obviously it makes her very sick) I was just saying that YES false positive blood work is a possibility, but not in her clinical case. There is a reason they say the clinical presentation is very important in diagnosis, she has it, positive blood work, it sounds good to us but NOT to the medical community. I only say push for biopsy in her case because she needs the firm diagnosis for a few of mine, and her stated reasons. Of course, if it makes you really sick and you don't need doctors or your family to believe you then skip the biopsy, I am giving her several view points to consider, that is all.

Do I think a Chicago celiac doctor would ignore her case? NO, not on her clinical basis, but like I said the most important thing about being officially diagnosed is to be eligible for the cure when it comes in the next 5-14 years (hopefully). I think it would suck to be unofficially diagnosed and come time for the cure and being a decade off gluten to have to eat it and be horribly sick for months (more sensitive to it once you stop) just so she could get access to the cure. That is all. Once again, you have celiac, but how important is the official diagnosis to you, that is the question.