Biopsy Indicates Beginning Stages... Doc Says No

[PossiblyCeliac?]

Hi there,

Just received the results of my biopsies.

The doctor says the biopsies show potential beginning stages of celiac. He says because the celiac blood tests were negative, he's ruling out celiac.

Has anyone else heard of these "beginning stages" of villi deterioration? Any idea what it might mean?

Thanks for your insight!

[kareng]

Get a copy of the blood tests and the pathology report and procedure report. Looks like you will need to see what was actually done and found.

[pain*in*my*gut]

Hi there,

Just received the results of my biopsies.

The doctor says the biopsies show potential beginning stages of celiac. He says because the celiac blood tests were negative, he's ruling out celiac.

Has anyone else heard of these "beginning stages" of villi deterioration? Any idea what it might mean?

Thanks for your insight!

What blood tests did you have done? All too often docs don't order the full panel.

[ravenwoodglass]

Did he also tell you to keep eating gluten and come back in a year to retest to see if your villi are totally destroyed yet? What did he say was the reason why he found the results he did find?

I agree you need to get full copies of your blood work and biopsy report. Make sure all celiac related testing, including total IGA is done and then give the diet a good try for a few months to see if it helps your symptoms. Some doctors don't want to diagnose until the villi are totally destroyed and bloodwork is a strong positive.

[Skylark]

If you have symptoms that resolve off gluten and villous damage, you are probably celiac. Blood tests are false negative 20% of the time.

[beachbirdie]

If your doctor acknowledges you might have damage that looks like the "beginning stages" of celiac, he is wrong to send you on your way thinking everything is hunky dory. If you have celiac, the damage will not "go away", it will continue to get worse.

Lucky is the person who knows they are celiac, before they suffer the terrible damage and discomfort caused by the nutritional deficiencies and cancers that occur with greater frequency in celiacs.

I don't think I'd stay with that MD.

[MitziG]

Sounds like your dr is not the brightest. Unfortunately, some want to wait until you have a serious problem before they diagnose you! Get all of your labs and pathology reports and let the folks here tell you if you have celiac. The majority of them know more about celiac than the average GI.

[PossiblyCeliac?]

Thanks for your insight!

I did request my blood and biopsy reports. Here are the results:

Transglutaminase: <3.0

IgA: Negative

Duodendum biopsy: Duodenal mucosa with normal villous architecture and slight prominence of intrapithelial lymphocytosis.

[Lisa]

Thanks for your insight!

I did request my blood and biopsy reports. Here are the results:

Transglutaminase: <3.0

IgA: Negative

Duodendum biopsy: Duodenal mucosa with normal villous architecture and slight prominence of intrapithelial lymphocytosis.

Silly Doctor!

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

[pricklypear1971]

Thanks for your insight!

I did request my blood and biopsy reports. Here are the results:

Transglutaminase: <3.0

IgA: Negative

Duodendum biopsy: Duodenal mucosa with normal villous architecture and slight prominence of intrapithelial lymphocytosis.

I found this. I doubt its the lab used for your report (you may try finding their interpretation)... but it does give you some insight into the meaning.

Open Original Shared Link

[beebs]

Yeah, my son had that - I think if we are talking about Mash scores, 1 & 2 is beginning stages (borderline) and 3&4 are diagnosable as coeliac, so annoying - it means there is damage there - but not enough to be conclusive - so he shouldn't send you on your way as there is obviously something going on.

[PossiblyCeliac?]

Pricklypear - great link. Thank you!

Lisa - does this mean the doctor ordered the wrong blood tests?

For the two of you and any others - if you were in my shoes, what would you do next? See a different doctor? Go gluten-free without an actual diagnosis?

I guess I'm not sure where to go from here. The doctor says he would like to put me on a medication for spastic intestines (i.e., a medication for IBS). I guess I'm just not sold on that. I don't want to take a medication that simply deals with the symptoms rather without eradicating the cause of the issue.

[Lisa]

I guess I'm just not sold on that. I don't want to take a medication that simply deals with the symptoms rather without eradicating the cause of the issue.

I'm with you there!!!! And yes, he ordered one test, that was not specific to Celiac. If you are not yet, gluten free, he can run the tests again using the full panel.

If not, you can opt to go fully gluten free and see if you symptoms subside. It does take time though, depending on the level of damage. And further testing cannot be accurate with gluten no longer in your system.

Many people here are self diagnosed and they feel quite comfortable with it. Some want a dx from a medical doctor. I guess you have to decide that yourself.

Hope that helps.

There are varied criterias for diagnosis.

Celiac Panel - Positive

Endoscopy Exam w/ biopsy - positive

Genetic pre-disposition - positve

Positive Dietary Results - positive

DH biopsy - positive

[pricklypear1971]

Pricklypear - great link. Thank you!

Lisa - does this mean the doctor ordered the wrong blood tests?

For the two of you and any others - if you were in my shoes, what would you do next? See a different doctor? Go gluten-free without an actual diagnosis?

I guess I'm not sure where to go from here. The doctor says he would like to put me on a medication for spastic intestines (i.e., a medication for IBS). I guess I'm just not sold on that. I don't want to take a medication that simply deals with the symptoms rather without eradicating the cause of the issue.

I think id do research and think about what I want to do. Talk to the doctor about getting a full celiac panel of bloo d work (if the panel wasn't done). Then, ask what his dx would be if a gluten-free diet relieves symptoms -will he dx Celiac?

I'd probably try gluten-free before taking meds...what if it is Celiac? If gluten-free doesn't help what's the docs plan to treat you? Just call it ibs and shove pills down? I can't imagine that will be very successfull.

[Takala]

For the two of you and any others - if you were in my shoes, what would you do next? See a different doctor? Go gluten-free without an actual diagnosis?

I guess I'm not sure where to go from here. The doctor says he would like to put me on a medication for spastic intestines (i.e., a medication for IBS).

Oh, this doc is a real rocket scientist, ain't he ?

" ....and slight prominence of intrapithelial lymphocytosis."

Gee, I wonder what could possibly be causing that.

I would ask the doctor to run a FULL CELIAC PANEL, not just the one weeny test.

If he refuses to do that, and still wants to put you on the medication, be sure you get the full test results in writing for what he did so far, the single blood test and the biopsy results. (be charming if you have to) I see you have these already at least in email form, that's good, but on their figurehead is better.

Then you take that, and go to a regular doctor and have him or her run the full celiac blood panel. that Lisa listed above. It doesn't have to be a gastro doc, a regular doctor can do this.

When you go to the blood draw, be sure to double check against your list that they are actually running the full panel, and not just one weeny test.

After full testing has been done, you will either have still have negative blood tests, positive biopsy, and symptoms, or be 3 for 3 with a positive blood test, biopsy, symptoms. Perhaps then, a normal doctor will consider you more likely to be celiac, but even so, THEN you can start playing around with elimination diets. You have made the full - faith effort to sort this out thru medical testing that other doctors will respect.

There is no use going off of gluten yet by yourself, to see if a diet trial produces relief of symptoms, if you're still ingesting it and can possibly get another positive test result out of it.

A lot of times here, I see people who go off gluten anyway, and then a few months in because they aren't perfect yet, they begin to doubt themselves and they mention this to a doctor who then retests and announces that they don't have celiac because the tests were negative - but they have not been eating gluten long enough again to produce damage and antibodies to it. But if they resume eating gluten, they are still sick, and they know they are still sick. But they have no "reason," and that upsets them. People who are also not officially diagnosed can also face social pressure from family, co- workers, friends, and in-laws that need to be dealt with to respect the gluten free diet. (People like me, who are very methodical, have a strong response to diet, have cooperative spouses and are very, ah, "stubborn" are not bothered as much as others, but you can't pick your in- laws. )

[nora-n]

if you scroll down a little bit here on this link, there is an explanation about increased IEL

[PossiblyCeliac?]

Thanks so much everyone for your insight on this... The information and links you're providing are excellent.

I've been following this forum (quietly) for a few months - wondering if it could be celiac causing my issues. I read about the frustration so many of your are feeling and certainly empathized. Now, though I'm feeling the frustration first hand.

People think I'm nuts for spending time on this website - as if I'm fishing for a celiac diagnosis. I've stopped talking about it with certain people because that's not the impression I want to give. I just want to find out why eating makes me sick. And I'm frustrated by the elusiveness of celiac and its symptoms... or more so the elusiveness of diagnosis.

Anyway, preaching to the choir. I'm sure you all feel the same way.