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

VeggieGal

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VeggieGal Contributor
VeggieGal
Posted

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.

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  • Replies 57
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guest134 Apprentice
guest134
Posted

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 Contributor
tom
Posted

...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 Contributor
VeggieGal
Posted
  • Author

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 Contributor
tom
Posted

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 Community Regular
nvsmom
Posted

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 Contributor
tom
Posted

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.

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guest134 Apprentice
guest134
Posted

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 Apprentice
guest134
Posted

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 Contributor
tom
Posted

...

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 Community Regular
Celiac Mindwarp
Posted

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 Proficient
1desperateladysaved
Posted

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 Proficient
shadowicewolf
Posted

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 Mentor
GottaSki
Posted

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 Contributor
VeggieGal
Posted
  • Author

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 Collaborator
luvs2eat
Posted

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 Experienced
Gemini
Posted

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 Mentor
GottaSki
Posted

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 Contributor
tom
Posted

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 Experienced
Gemini
Posted

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 Community Regular
nvsmom
Posted

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 Contributor
VeggieGal
Posted
  • Author

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 Experienced
Gemini
Posted

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 Experienced
Gemini
Posted

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.

guest134 Apprentice
guest134
Posted

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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      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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