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


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#16 luvs2eat

 
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Posted 29 November 2012 - 08:49 AM

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.
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

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#17 Gemini

 
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Posted 29 November 2012 - 08:58 AM

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!
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#18 GottaSki

 
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Posted 29 November 2012 - 09:11 AM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#19 tom

 
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Posted 29 November 2012 - 09:24 AM

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.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#20 Gemini

 
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Posted 29 November 2012 - 09:30 AM

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.
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#21 nvsmom

 
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Posted 29 November 2012 - 09:34 AM

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)
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#22 VeggieGal

 
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Posted 29 November 2012 - 09:50 AM

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 (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.
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#23 Gemini

 
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Posted 29 November 2012 - 10:01 AM

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! :)
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#24 Gemini

 
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Posted 29 November 2012 - 10:22 AM

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..... :angry: 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.
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#25 guest134

 
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Posted 29 November 2012 - 10:55 AM

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.
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#26 tom

 
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Posted 29 November 2012 - 11:38 AM

"The cure"? :huh: 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"?

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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#27 Gemini

 
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Posted 29 November 2012 - 12:02 PM

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! ;)
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#28 guest134

 
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Posted 29 November 2012 - 12:40 PM

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 - http://www.curecelia...-celiac-disease


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. http://www.curecelia...-celiac-disease

Infectious illness transiently rising ttg:
http://www.ncbi.nlm....les/PMC2810390/

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.
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#29 Takala

 
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Posted 29 November 2012 - 01:13 PM

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.
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#30 Celiac Mindwarp

 
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Posted 29 November 2012 - 01:39 PM

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.

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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image




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