Biopsy Results

[jnh380]

I saw the results from my biopsy (without talking to the doctor about them...) and it stated that in my duodenum there was "Focal Partial Villous Blunting"

does anyone know what that means specifically?

I had a high result on TTG igA and now the biopsy seems to confirm a diagnosis. I guess I am all but officially diagnosed by a doctor.

[Skylark]

It means there are patches of partial villous damage. You have celiac disease.

This is always sort of a good news/bad news thing. The diet is tricky but you should feel a lot better on it!

[jnh380]

Thanks Skylark, I am actually happy that I found out it is true. I have had so many weird symptoms and episodes of anxiety, depresion, irritability, tingly hands, heartburn, etc. that it is great to have a concrete reason for them. Something that has a relatively simple treatment and prognosis.

But boy will I miss coffee cake, french bread, doughnuts, etc.

[Skylark]

Good, I'm glad you are happy to have a diagnosis. I never know what to say with the positive tests. Some people are relieved but others are really upset about the celiac disease.

All the foods you listed are available gluten-free.

You can make good coffee cake from gluten-free Bisquik.

Open Original Shared Link

I've heard the Against The Grain baguettes are good if you can find them. I haven't tried them myself. Kinnikinnick makes gluten-free cake donuts, usually available frozen. My favorite are the chocolate covered ones!

[beachbirdie]

  On 4/24/2012 at 5:38 PM, jnh380 said:

I saw the results from my biopsy (without talking to the doctor about them...) and it stated that in my duodenum there was "Focal Partial Villous Blunting"

does anyone know what that means specifically?

I had a high result on TTG igA and now the biopsy seems to confirm a diagnosis. I guess I am all but officially diagnosed by a doctor.

Thanks for the update! I hope you will soon be feeling great. I feel like Skylark, never sure whether to be happy for the positive results or whether to be sorry.

Knowledge is power, or so they say, so if one is feeling crummy it's nice to know that it's from a cause that is relatively easy to handle without a lot of drugs and procedures!

[jnh380]

ok, so I got an 3 sentence email from my doctor that said my biopsy did not show the classic features of celiac. i'm pretty annoyed that it was so brief. now I dont know what to do. I guess for now I follow my 'gut' and stay on the diet since I see improvement every day with it.

  On 4/25/2012 at 5:58 PM, beachbirdie said:

Thanks for the update! I hope you will soon be feeling great. I feel like Skylark, never sure whether to be happy for the positive results or whether to be sorry.

Knowledge is power, or so they say, so if one is feeling crummy it's nice to know that it's from a cause that is relatively easy to handle without a lot of drugs and procedures!

[Takala]

First - You go to the doctor's office, and you get the test results in writing, and you don't leave until they give them to you. The actual report. Not his/her 3 line interpretation of it.

You may have to then schlepp it to your new doctor.

You should have seen what they tried "disappearing" on one of my test scans.

[Mateto]

  On 4/26/2012 at 1:52 AM, Takala said:

First - You go to the doctor's office, and you get the test results in writing, and you don't leave until they give them to you. The actual report. Not his/her 3 line interpretation of it.

You may have to then schlepp it to your new doctor.

You should have seen what they tried "disappearing" on one of my test scans.

Yes! I second this!

My doctor wouldn't even suggest coeliacs, but since I've been gluten-free....I have been getting better!

Funny thing, doctors. They say they're here to make us better yet try to hide what's wrong with us.

[jnh38]

  On 4/26/2012 at 1:52 AM, Takala said:

First - You go to the doctor's office, and you get the test results in writing, and you don't leave until they give them to you. The actual report. Not his/her 3 line interpretation of it.

You may have to then schlepp it to your new doctor.

You should have seen what they tried "disappearing" on one of my test scans.

Thanks, I agree and asked him for the report straight up. My problem is i have Kaiser and can't go to a new doctor. They are a closed system. maybe I could ask for a second opinion but thats about it. I really need to get the biopsy report and read it for myself. I am also just frustrated that there is no clue as to the follow up. what do I do with my diet? are there more test? could it be other things? why was my blood test so positive? I am really pissed.

[mushroom]

  On 4/26/2012 at 2:57 AM, jnh38 said:

Thanks, I agree and asked him for the report straight up. My problem is i have Kaiser and can't go to a new doctor. They are a closed system. maybe I could ask for a second opinion but thats about it. I really need to get the biopsy report and read it for myself. I am also just frustrated that there is no clue as to the follow up. what do I do with my diet? are there more test? could it be other things? why was my blood test so positive? I am really pissed.

Yes, I think you do definitely need a second opinion. Better for a non-profit that you have celiac disease than something they have to treat, anyway. Let us know what the reports say when you get them.

[nora-n]

high Ttg IgA and villous blunting and clinical response to the gluten free diet means celiac nowadays, but on the old days they demanded total villous atrophy.

I know in the past patients have requested that the U of Maryland give a secnd opinion on their slides (as they diagnose celiac even with increased IEL´s )

[Bubba's Mom]

  On 4/26/2012 at 2:57 AM, jnh38 said:

Thanks, I agree and asked him for the report straight up. My problem is i have Kaiser and can't go to a new doctor. They are a closed system. maybe I could ask for a second opinion but thats about it. I really need to get the biopsy report and read it for myself. I am also just frustrated that there is no clue as to the follow up. what do I do with my diet? are there more test? could it be other things? why was my blood test so positive? I am really pissed.

With positive blood tests and some villi damage..you are Celiac!

Get a copy of your test reports. Stop all gluten.

Even if you are are restricted to certain Dr.s right now, you may not be forever? It would be very good to have these test results for your file.

Many of us have found things in test reports that were just brushed off by a Dr. Things that should be followed up.

[1974girl]

that is so strange. My daughter had the exact same thing and yet they diagnosed her with celiac. She only had "simplification" of the villi and it was only in her duodual bulb. But because of her high Ttg and positive EMA, they said it was. Did you have the anti-endomysial antibody test (EMA)? It would say "positive or negative". From what I hear, it is about 99% accurate. I do know that a milk allergy can cause blunting too. But it doesn't cause high Ttg. I think they missed your diagnosis.

[jnh380]

Thanks for the responses everyone! I will try to speak with the GI doc soon and find out more. I will let you know what I find out. In the meantime I am staying on the gluten-free diet and feeling better.

[Skylark]

Is there some specific reason you need a formal diagnosis? Otherwise it may not be worth the bother of a second opinion. You obviously need to get the biopsy report (and if you are in the US you are entitled to it by law) but it seems your GI is in the stone ages as far as celiac diagnosis.

[jnh380]

  On 4/26/2012 at 4:35 PM, Skylark said:

Is there some specific reason you need a formal diagnosis? Otherwise it may not be worth the bother of a second opinion. You obviously need to get the biopsy report (and if you are in the US you are entitled to it by law) but it seems your GI is in the stone ages as far as celiac diagnosis.

first off, no i did not get the EMA blood test. just the TTG test and it was in Kaiser's units. My PCP told me i was in the 'High" category but not the "extremely high" category. pretty vague.

Skylark,

I guess the way I think about things makes me want certainty. Having a doctor tell me it is celiac clinically would make me feel like it was totally valid. I hate to say it but it feels better to me to say I was formally diagnosed, rather than be someone who could fall into the 'fad' category. Like if a dr didn't prove it, there will always be doubt, from me, my wife, family and friends. I know there are a lot of opinions on this, but i feel it would make a difference.

I guess I was hoping for a quick resolution to this. Now the water is muddied and I need to forge ahead on my own, do my own testing and research into this. I believe deep down that this is true, to about 99%, since I think I have experienced so many symptoms and exhausted all other paths to feeling better.

Thanks for your support and I will report my progress.

[Skylark]

The water is NOT muddied. You have high TTG and villous damage. That's celiac disease, 100% without question. Gold-standard blood and positive biopsy. There are people on this board who would give thousands of dollars for unambiguous test results like yours.

You need to get over your reverence of a dude in a white coat with a stethoscope. Remember that the worst medical student in the class still gets an MD and treats patients. People are undiagnosed and misdiagnosed on a daily basis, and sometimes they die from it, partly because they put blind trust in the dude in a white coat and refuse to take responsibility for their own health.

Educate yourself by all means! Get your biopsy report, learn about the tests, understand for yourself why every single knowledgeable poster who has contributed to this thread is telling you that you have celiac.

[Takala]

  Quote

My problem is i have Kaiser and can't go to a new doctor. They are a closed system. maybe I could ask for a second opinion but thats about it. I really need to get the biopsy report and read it for myself. I am also just frustrated that there is no clue as to the follow up. what do I do with my diet? are there more test? could it be other things? why was my blood test so positive? I am really pissed.

Yes, but you have the legal right to your test results. Which you have already paid for, and they have contracted to provide. Getting your actual test results needs to be your first priority. Then you can figure out what you want to do with them.

Once the HMO doctor(s) realize that their attempt to withhold information is not working, one of two things will happen- they will reluctantly cough it up, or they will still attempt to stonewall you, and start lying about it. Or they will "lose your results" ! If they are lying about it, you have grounds for legal action against them. You don't actually need to threaten them, just know what your rights are. But you need to get the test results before these *******s "misplace" them !

My experience with Kaiser HMO was so horrible, my spouse got the company he worked for at that time to offer different health insurance for the employees who were willing to pay more in premiums, so Kaiser didn't injure or kill them off with their penny pinching negligence. That is how unethical Kaiser HMO can be. I am convinced that Kaiser routinely sorts out their customers with chronic conditions that they think might cost them a bit of profit, and harasses them with deliberate refusal of granting appointments/ diagnosis/treatment until they decide to go elsewhere, just so they can claim they have great statistics- and keep their bait and switch premiums lower.

It's really cheaper for most companies to offer health insurance that treats small problems in a timely matter promptly, than to have employees have to take buckets of time off going to repeated appointments (that took 2 months to set up) with HMO doctors who are programmed to tell the patient "there is nothing wrong with you," especially when there really is something very, very wrong with you.

Down the road, if you do have a chronic condition related to auto immune disease, which celiac is, and need prompt, timely treatment, if Kaiser refuses to acknowledge, they will attempt to refuse treatment, which can be deadly. Don't be the next statistic because you thought you were saving a few hundred bucks a year with the HMO.

[jnh38]

Skylark,

So i got my records from Kaiser today and wanted to share them for your input. I quote: (and this is ALL it says)

"the duodenal biopsies show focal partial villous blunting, the significance of which is unknown. the majority of specimen shows no evidence of villous blunting. please refer to the clinical information for additional diagnostic assessment"

looks like they took 5 specimens from the duodenum and four from the stomach (for H pylori). Ok so from what I see they do not mention IEL count, crypt/villi length ratios, etc. either they don't see anything or they aren't looking for them. Either way they should have written something about that in the report. Secondly, why would my GI tell me that the biopsy showed no classic signs of celiac disease, when in fact the ONLY thing it says it that there is some evidence of a classic sign of celiac? I am very confused. I am glad i got this report for myself. I think it confirms that I have all three legs of the stool (no pun intended), blood test, biopsy, and symptoms of celiac, as well as i feel better off gluten.

Thanks for your help and advice, i appreciate it.

[Skylark]

I totally agree with you. I think your doctor was looking for phrases like "total villous atrophy" rather than "villous blunting". Some GI doctors only diagnose when damage is severe, even though recent research says that blood + even increased IEL should be considered celiac. To me that report looks like perhaps there was mild, patchy damage. I agree it's terse and seems to be missing a lot of information.

With that biopsy, positive blood test, and obvious gluten sensitivity I think you have plenty of information to consider your diagnosis completely valid.

Oh, and by the way we've seen doctors screw up on positive biopsies before. That's why around here we always tell people to get their biopsy reports.

[beachbirdie]

Exactly what Skylark said.

The pathologist who writes the report does not perform any diagnosis, just describes the observation. It is up to the doc to make the diagnosis, and this doc clearly missed it.

Was he planning to wait until you DO have total atrophy before awarding his Seal of Approval?

Ugh.

[jnh38]

Thanks guys. I just received and email from the dr. and to his credit, this is what he says:

"This is not the classic finding in celiac disease, but it certainly

could represent mild, early, or partially treated celiac disease. The

real test is how much better you do on the diet. Since you are feeling

definite improvement, I think you do have perhaps a mild form of

celiac disease."

So i guess you are right, for them to be confident, it needs to say something like total atrophy or it was totally obvious. But at least he came around to what we believe is common sense.

[beachbirdie]

  On 4/28/2012 at 1:24 AM, jnh38 said:

Thanks guys. I just received and email from the dr. and to his credit, this is what he says:

"This is not the classic finding in celiac disease, but it certainly

could represent mild, early, or partially treated celiac disease. The

real test is how much better you do on the diet. Since you are feeling

definite improvement, I think you do have perhaps a mild form of

celiac disease."

So i guess you are right, for them to be confident, it needs to say something like total atrophy or it was totally obvious. But at least he came around to what we believe is common sense.

That certainly ups your doc in MY estimation!

Happy healing!

[mushroom]

They do need to be aware that not everything is classic. If everything were classic, doctoring would be easy peasy. The trouble is that most things are not classic. That's why they are doctors, to winnow the wheat from the chaff so to speak.

[Skylark]

  On 4/28/2012 at 1:24 AM, jnh38 said:

Thanks guys. I just received and email from the dr. and to his credit, this is what he says:

"This is not the classic finding in celiac disease, but it certainly

could represent mild, early, or partially treated celiac disease. The

real test is how much better you do on the diet. Since you are feeling

definite improvement, I think you do have perhaps a mild form of

celiac disease."

So i guess you are right, for them to be confident, it needs to say something like total atrophy or it was totally obvious. But at least he came around to what we believe is common sense.

That's great! You got the formal diagnosis you were looking for! I'm glad your doctor came around. Doctors are trained not to diagnose unless they're certain, but that doesn't always work out very well with celiac because it can be hard to catch with diagnostic tests.