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

[tom]

"The cure"? Pretty off topic but I say don't hold your breath - or make decisions today based on hopes of autoimmune diseases having cures.

It looked to me that VeggieGal was more concerned w/ the continuing gluten challenge than w/ the endoscopy procedure itself. Some replies seem to be running on the opposite premise.

Hi, VG, I see you're reading - so hypothetical question: If the Dr said "gluten-free is fine now, but I still want to get a look w/ an endo & take samples", would you be more likely to respond "ok, good" or "I don't know if I want to do that"?

[Gemini]

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.

There are no false positives with celiac bloodwork...only false negatives. If the tTg is positive from another source other than Celiac, then the EMA and IgA/IgG testing would be negative, which would make sense. You will not test positive on an EMA from anything else. But you are correct in that tTg can be elevated from other AI diseases so that's why a full Celiac panel needs to be done.

It really doesn't matter what the medical community thinks with regards to a celiac diagnosis made by other means than an endo. No one needs a doctors permission to eat gluten free.

If a doctor refuses to diagnose based on positive blood work, then you need another doctor. Even the leading researchers in the US do not think the endo is needed now, if you fit a number of criteria. Why would you trust someone who refuses to see the obvious? I went to a new PCP and told her I was a Celiac. I told her I did not do the endo and showed her my blood work...that changed her mind, along with the fact that I am one of those skinny Celiacs. I have yet to weigh over 112 pounds, soaking wet, so they always believe me. I admit that is a plus in the convincing department. But if she had said I would have to do an endo, I would have dumped her and moved on. Ditto for my family. If going gluten-free is what it takes for me to be well and healthy, I don't give a rat's butt what anyone thinks about it. Hell...I was officially diagnosed by blood work and other criteria yet my family still don't listen to me and they all have problems with gluten. Yeah...good luck with that!

I won't even go into the cure thing other than to say......don't hold your breath. It doesn't matter to me anyway...I already have the cure. The gluten-free diet!

[guest134]

Gemini, it is great that you feel that way with yourself however the poster has expressed her own concerns on validating it to her family and doctors. We also don't know what tests she did have, what if it was the antigliadin IgG and it came back barely over positive? Not every case is clinically similar to yours so saying this happened to you so it will happen to another person is not right. Each person has their own way of doing things and I am providing the posters with as much information as I can so they can chose their own correct path. The poster expressed concerns about official diagnosis and I therefore gave her some options and valuable info to know, we can't treat every case that comes on here like it is the same thing, looking at the whole picture is what helps us achieve accurate diagnosis that the poster is happy with.

Yes talking about a cure is far fetched at this point but I am only adding in some possible options for the future so that in the end she can take comfort knowing she made the right decision for herself based on all variables.

And also, for you to say there are no false positives only negatives is not accurate, as I have shown through several medical studies, how many times do I have to pull up this literature until you will believe it?

Is it possible to have a positive blood test, but not have celiac disease?

Yes, blood work can be falsely positive, as can any test in medicine, especially at low titers - Open Original Shared Link

Could you have positive blood work and a positive biopsy and not have celiac disease?

Positive blood work (meaning tTG or EMA) and a biopsy consistent with celiac disease are rarely due to other causes. However, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar. Open Original Shared Link

Infectious illness transiently rising ttg:

Open Original Shared Link

I can pull up dozens more, can you provide me with the links in which you gathered that there are no false positives?

Also, you say a biopsy is not needed based on the numbers, yet we don't know her numbers.

[Takala]

If these researchers are so brilliant at creating a future "cure," then why don't they work on finding a "diagnosis" that doesn't make patients deathly ill why they are at it, is this too much to ask ?

Otherwise, considering that the Orig. Poster is in the UK and on the NHS, plus has other auto immune thyroid problems, she has to deal with THAT system in order to get access to medications and possibly subsidized foods that she needs to stay healthy, so we don't really have any right to tell her to do one thing or the other, only to offer suggestions. The NHS in some areas is attempting to get rid of subsidized gluten free food prescriptions, so if they are attempting to refuse to diagnose patients as a cost savings measure ("celiacs? we don't see any, be on your way, now!") that may put her health at risk, and she needs to, unfortunately, jump through whatever hoops they have to get an "official" diagnosis.

I always say, test out to the max that you can put up with, and can get from your insurance, then go gluten free anyway if your symptoms match those of a celiac or a gluten intolerant. And if you feel better gluten free, there is your answer. I went through several decades of illness, and years of medical denial and nonsense, and finally gave up on the "official diagnosis" part, but my primary care physician accepts my gluten free status because I had such shocking other test results, and my health has obviously improved dramatically on this diet. Your milage may vary. No one should eat something which makes them feel bad, just because a doctor could not get their act together.

[Celiac Mindwarp]

Hello again

I wonder if you could speak to a specialist about doing the endoscopy given your previous surgery history?

Most people in the UK seem to be offered either a sedative or to be awake and have an anaesthetic throat spray. Normally I'd say the throat spray would be fine, but there is a tendency to gag on the tube. Again, normally that is ok (if not the most fun). Don't think this would be ideal for you.

If you do go for the endoscopy, you might want to make sure whoever does it can cope with your existing condition, and thinks it is wise to proceed.

From what you have said, it looks like the blood tests say you have celiac for sure. I think sadly the NHS is behind in still wanting biopsy.

The bloods alone and your experience without gluten may be enough to make the gluten-free commitment for life, and we will be here to help yot through the transition.

My 'official' diagnosis is 'Non Celiac Gluten Intolerance, cannot rule out celiac'. I couldn't eat gluten long enough. But I tell people I have celiac. And I take the diet seriously, so other people mostly do

Maybe if your doctor took account of not wanting to cause throat problems they might consider the better drugs (and the prescription food might not be as important as you think).

Tough call on the biopsy, good luck.

[Gemini]

Gemini, it is great that you feel that way with yourself however the poster has expressed her own concerns on validating it to her family and doctors. We also don't know what tests she did have, what if it was the antigliadin IgG and it came back barely over positive? Not every case is clinically similar to yours so saying this happened to you so it will happen to another person is not right. Each person has their own way of doing things and I am providing the posters with as much information as I can so they can chose their own correct path. The poster expressed concerns about official diagnosis and I therefore gave her some options and valuable info to know, we can't treat every case that comes on here like it is the same thing, looking at the whole picture is what helps us achieve accurate diagnosis that the poster is happy with.

I don't recall comparing her set of circumstances to mine, I just responded to your post about false positives on the tTg test. If you have a positive on the tTg, even a barely positive one, then you may have any one of the AI diseases that will raise tTg. I have 2 AI diseases that will raise tTg so I know the work required to lower it to normal. The other tests done, the AGA IgA/IgG or the newer, more accurate test, DGP, test for reaction to gluten, not for intestinal damage. If you have a barely positive one for DGP, then you still are showing a reaction to gluten. You just may be in the beginning stages of Celiac. It takes time to ramp up for a flaming positive result. I have yet to meet anyone who had a false positive that didn't end up having a problem with gluten but I guess you can never say never. Most people are told they are fine, test is negative yet they still have symptoms of a gluten problem. This is the point where people get fed up and try the diet because medical testing for Celiac is still not good and misses many people.

Yes talking about a cure is far fetched at this point but I am only adding in some possible options for the future so that in the end she can take comfort knowing she made the right decision for herself based on all variables.

I understand your point completely but basing a decision for a test on whether they may have a cure in 10 years is just not a good way to make a decision.

And also, for you to say there are no false positives only negatives is not accurate, as I have shown through several medical studies, how many times do I have to pull up this literature until you will believe it?

We have seen many times on this forum people who were told they were fine, no gluten problem, when they had slightly over the top positives. Doctors do this also with thyroid disease.

My sister has positive antibodies for Hashi's but the doctors refuse to treat her thyroid condition because her antibodies weren't high enough. She has symptoms but they will not treat.

Not good medical advice. We are dealing with AI diseases which are extremely hard to test for. If you have symptoms and other AI dieseases popping, who are you going to believe?

Is it possible to have a positive blood test, but not have celiac disease?

Yes, blood work can be falsely positive, as can any test in medicine, especially at low titers - Open Original Shared Link

Any slightly positive test should be investigated more deeply and doing a full Celiac panel is essential. Without it, you can't really make any diagnosis. Most people who request testing for Celiac are having symptoms to suggest a gluten problem to begin with so I highly doubt they would have a false positive. They may not have full blown Celiac but that doesn't matter....any level of gluten intolerance or sensitivity calls for a gluten free diet to return to health. We know there are many with this problem and they don't need a "firm" diagnosis to stick to the diet. They just want to get better.

Could you have positive blood work and a positive biopsy and not have celiac disease?

Positive blood work (meaning tTG or EMA) and a biopsy consistent with celiac disease are rarely due to other causes. However, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar. Open Original Shared Link

Crohn's disease is a disease of the large intestine. Celiac is a disease of the small intestine. It may raise tTg but it won't trip the EMA. Any good GI doc worth their medical license should not have a problem figuring out Crohn's vs. Celiac. I know people with Crohn's....it presents somewhat similar but Celiac ultimately does not require removal of portions of your large intestine. IMO...Crohn's is much worse. Rarely do you get away with not having surgery.

Infectious illness transiently rising ttg:

Open Original Shared Link

Yes, I did point out that there are other reasons why tTg can be raised. But if you look at the whole picture, including testing for vitamin deficiencies, anemia, and other AI conditions associated with Celiac, plus doing a full celiac panel, it can be figured out by a qualified physician. This is not rocket science. Not to mention that one can have a positive blood test and a negative biopsy. How many times have we seen that on the forum? The biopsy is far from perfect yet this is the Gold Standard? Without doing all the blood testing I mentioned above and relying on a biopsy as the ultimate in diagnostics, we have the average of an 11 year hell for obtaining a diagnosis in the US.

I can pull up dozens more, can you provide me with the links in which you gathered that there are no false positives?

Again, I am not sure if there is such a thing as a false positive. If you are going to a doctor because you have symptoms of something, and they test you for Celiac by doing the usual blood work and it trips one test, then why would you think it's false if you are having symptoms? You may have any one of the problems linked to elevated tTg but it could be Celiac.

It might be something else but many docs stop there when finding the problem becomes more difficult. That happened to me years ago and it still happens all the time...that's why people come here for advice. They are told they are fine so stop worrying. You will also find that many people have other AI diseases linked to celiac or family members already diagnosed or full of symptoms but in denial. You have to look at the whole picture and not rely just on a biopsy.

All I am doing is questioning the notion of a false positive. I don't believe that tripping a tTg test will result in a false positive. It usually indicates an underlying problem that needs to be figured out.

The OP mentioned she had her thyroid removed due to Graves. She had 2 positive blood tests and had a positive dietary response. Considering that thyroid disease is highly linked to Celiac and she had 2 tests plus a positive dietary response, it's insane to ask her to start eating gluten again. Only when Celiac's push back at doctors to not have to go to such extreme measures for a diagnosis, will things change. I also understand her concerns about doing a biopsy when she already had one doctor mess up and cut a vocal cord doing something else. She has good reasons not to and they shouldn't hold her hostage because of Rx food she doesn't need. That's just wrong.

[Gemini]

Otherwise, considering that the Orig. Poster is in the UK and on the NHS, plus has other auto immune thyroid problems, she has to deal with THAT system in order to get access to medications and possibly subsidized foods that she needs to stay healthy, so we don't really have any right to tell her to do one thing or the other, only to offer suggestions. The NHS in some areas is attempting to get rid of subsidized gluten free food prescriptions, so if they are attempting to refuse to diagnose patients as a cost savings measure ("celiacs? we don't see any, be on your way, now!") that may put her health at risk, and she needs to, unfortunately, jump through whatever hoops they have to get an "official" diagnosis.

You don't need the subsidized foods in the UK as the stores are full of gluten-free options like we have in the US. Genius bread is sold in many food stores and it isn't overly priced, from what I can remember from my last trip. As for thyroid meds, I would imagine that there are alternative docs in the UK who would be more than happy to help. Thyroid meds are not expensive, for the most part, although I have never heard of a syrup for it. I pay out of pocket for my Nature-throid and it's cheap...surprisingly so. Besides, why would not having a biopsy have anything to do with your thyroid? Even in foreign countries, there are generics that cost less. Sometimes it's easier to pay a bit more and avoid the hassle with the mainstream medical establishment. That is true here in the States.

[JNBunnie1]

Veggiegal, have your doctors informed you directly that they will prescribe alternative

thyroid medications ONLY if you have a positive Celiac biopsy?

[guest134]

There are two types of false positives and I am not sure which one you are talking about:

1- Standard testing error: You test with the max being 20 and you are 21, next test and subsequent follow up you are back under negative, that would be an instrumental error. That can happen, especially with antibodies were a machine or person is diluting them, minor errors can happen and that is why they typically need to see a minimum of double the normal result before thinking about clinical significance. I honestly think you are giving these testing methods more credibility than they deserve, doctors understand this better than we do and that is why you have to put some trust in them. You have seen a bunch of people who ended up getting it later, but there are many people who went on to be fine after medical follow up for years too.

2- Other issue- This was the one I have been referring to most often when I speak of false positives, TTG and autoantibodies are often elevated during any sort of inflammation, this has been tried and tested, so if something else was inflaming your intestines (i.e- infectious illness) there is a possibility they will be transiently elevated. I suggest you take a look at medical surgery forums and see what whack results some patients get while going through surgery, autoantibodies will sky rocket to the thousands to drop back down to normal months later. Surgeons know this all too well.

Also you are assuming that medical doctors just say "false positive" and that's it. Most of the cases that I have seen were based on further testing, and a return to a negative result in whatever time frame. I will never tell someone to just brush off a false positive result but I make them aware of the possibility and the need for further testing to get an accurate picture.

You are missing what I have been trying to say the whole time, I want to know the posters medical history, family background and other clinically relevant info before I give judgement on what their results may mean. I ask all this to think of all the possibilities of why their antibodies will be elevated, and not everyone has the same clinical presentation. I told this poster that she has celiac, I simply answered a yes or no question along with it.

You give an example of an easy to diagnose celiac presentation, this person has said nothing about anemia, low vitamins, etc. I asked her about those so we can understand her situation more, as of right now all we know she has had two positive tests and nothing else, we don't know what tests or what numbers either. I also said that because of her reaction to gluten she most definitely has it.

[Celiac Mindwarp]

Is it time to shift some of this debate to another thread?

[GottaSki]

Yes - great idea Mw!

Can we wait for VeggieGal to respond before we continue on the advanced testing techniques?

[VeggieGal]

Hi, I'm back with results altho they mean nothing to me! Hope someone can interpret? (Im copying word for word..looks greek to me!!)

"Ser tiss transglutaminase lev (RPK3015) 15.3 u/ml

(Info. with a tTG result of greater than 0.2 u/ml IgA deficiency is unlikely)...at the side of this statement it said norm levels between 0.00-10.00u/ml.

Serum endomysium antibodies (RPK3015) Weak positive

IgA tTG and IgA endomysial antibody both positive. High probability of coeliac disease. Suggest referral to gastroenterologist for further opinion. Do NOT exclude wheat from diet prior to biopsy."

My serum ferritin is 10 ng/mL (norm should be 22-322 ng/mL)

So there you have it (in easy terms my gp said i have a weak positive on endo and a high positive on transglu)

Thanks for any input you may have???

[guest134]

Well you had 2 slight positives in relation to tissue damage, endomysial is about 97 percent specific and TTG 95 for celiac. Your intestines are damaged and in your case it is very likely due to celiac, however there were no gluten response tests done which is an important step prior to the biopsy. Did you have deamidated or anti-gliadin peptide tests done? If not, do the deamidated version as it is very important to see how your body is reacting to the consumption of gluten.

[VeggieGal]

Hi toworryornot, no ive only had those two blood tests. . So does that mean theres another blood test more specific to coeliac (deamidated?) i shouldve had done? Im seeing consultant on Saturday to discuss me having biopsy so il ask about the deamidated version. Thank you

[Gemini]

Hi toworryornot, no ive only had those two blood tests. . So does that mean theres another blood test more specific to coeliac (deamidated?) i shouldve had done? Im seeing consultant on Saturday to discuss me having biopsy so il ask about the deamidated version. Thank you

Hi VeggieGal,

The DGP is a more sensitive test than it's predecessor, the AGA IgA. Both tests have merit in evaluating for Celiac but the DGP is the newer test and more often done here in the States now. You should have those done also but from what your results are that you posted, there is no doubt you have Celiac Disease. Doing the biopsy is not needed for confirmation but if you feel the need to do one, then have it done. I hope it all turns out well and you can go ahead with the gluten-free diet and healing!

[VeggieGal]

Hi Gemini, thank you..Im definitely going gluten-free whether I do biopsy or not because in the weeks I tried it, I really felt the difference and would rather not take the health risk. I'm actually looking forward to it ..I know it'll be a challenge being a veggie as well, but Im sure the support on this site will help me through it

[Gemini]

Hi Gemini, thank you..Im definitely going gluten-free whether I do biopsy or not because in the weeks I tried it, I really felt the difference and would rather not take the health risk. I'm actually looking forward to it ..I know it'll be a challenge being a veggie as well, but Im sure the support on this site will help me through it

You may want to take a look at this cookbook......http://www.celiac.co...-cookbook-ever/ It was recommended by a forum member. I am not a vegetarian but LOVE veggies and include a lot of them in my diet. I tried ordering this but they were out of stock, which says something for the book. I will try again because it looks really good.

[shadowicewolf]

I would just like to point out, that with any test there is always a possibility for a false positive. Be it due to a machine or human error. It is just really, really rare.

[VeggieGal]

Gemini, Awww thats brilliant thank you!

There's actually loads of copies on Ebay if you type in "River Cottage Veg" its not the cheapest book but it does look really good or maybe it can be ordered at a library

[Gemini]

Gemini, Awww thats brilliant thank you!

There's actually loads of copies on Ebay if you type in "River Cottage Veg" its not the cheapest book but it does look really good or maybe it can be ordered at a library

Thanks for the tip! I want this cookbook.

[Gemini]

I would just like to point out, that with any test there is always a possibility for a false positive. Be it due to a machine or human error. It is just really, really rare.

I agree. Why doctors say this is beyond me. Celiac is not rare but false positives, if they really exist, are rare indeed!

[GottaSki]

I agree. Why doctors say this is beyond me. Celiac is not rare but false positives, if they really exist, are rare indeed!

Well said and very true indeed!

[nvsmom]

I was diagnosed with a positive ttg IgA and a positive EMA IgA... same tests that you had done. Those were good enough for me but it's a personal choice whether to pursue further testing.

Welcome to the club. Hope you feel well soon.

[VeggieGal]

Thanks nvsmom.. looking forward to getting better!

[VeggieGal]

Well I saw the consulant today and i asked if I really need the biopsy? He said unfortunately yes because we have to go through proper protocols. I asked if it is possible to not find anything on the biopsy even if i am celiac? He laughed and said yes there is a good chance the biopsy could not find anything depending on how long ive had celiac/if ive been consuming enough gluten/and where samples are taken. He told me not to worry because in the event of that happening he would become my advocate and dx me as celiac based on symptoms, history and blood results. (feel so relieved that whatever the biopsy outcome, he will dx me...just nervous of going through it now!).

He said I will need a bone density test? and is sending me for blood tests (B12 etc). And wants my close family to be celiac tested. He also said that whilst doing the biopsy they would check for lactose issues?

It was nice to have a doctor who listened and seemed thorough. He then said Have a very happy gluten-free Christmas !!