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kayavara

Biopsy Reports Confuse Me

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On 4/4/08 I had an endoscopy done.The doctor's office calls a week later and says to come in for a consultation.I get there and he says we need a blood test to check for Celiac because I think you have the signs/symptoms.....although your biopsy came back negative. Your villi are blunted and I want you to inform your family of the situation and go on the celiac diet immediately for 4 months.In August ,we will do another biopsy to see if the villi are healed.The blood tests came back a week later as negative.

I had another appt. on Friday 5/16/08...a follow up. He asked how I felt....lots better on the celiac diet...except for the rare cc....bloating,gas,heartburn,depression,skin issue(not sure if it's DH)etc....all much better.I ask for a report of the biopsy and blood tests.He is able to print out the biopsy report before the printer crashes...they promise to mail the blood tests results,which were negative.

My question comes from reading my report....which states:

FINAL PATHOLOGICAL DIAGNOSIS:

1. Small Bowel:

Moderate Non-Specific Chronic Inflamation

Villous Blunting and Atrophy

No Increase in Intraepithelial Lymphocytes

Comments:

The findings are non-specific and not diagnostic of celiac sprue.

2.Gastric:

Mild Non-specific Chronic Inflamation

No Evidence of Active Acute Inflamation

No Helicobacter-Like Organisms Identified on H&E

3.Esophageal:

Suggestive of Reflux Esophagistis

O.K....the biopsy was suppose to be negative as was the blood tests.He wants me to stay on the diet because I had blunting of the villi. This is where I miss the point.What was negative???He found villi blunting and atrophy.What else would he find to make a positive biopsy?


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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I'm puzzled. Villous atrophy was diagnostic of celiac as I understood it. When I had my endoscopy in 2000, the biopsies found "significant villous atrophy" which I was told meant celiac. The GI told me it was an advanced case. That would explain the severity of my symptoms.

I don't know what else might be needed for the biopsy to be considered positive.

I don't know what "No Increase in Intraepithelial Lymphocytes" means. :unsure:


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Small Bowel:

Moderate Non-Specific Chronic Inflamation

Villous Blunting and Atrophy

Gastric:

Mild Non-specific Chronic Inflammation

Esophageal:

Suggestive of Reflux Esophagistis

Really, who is the ignorant person who read this report and claimed there is no evidence of celiac disease? That is utterly ridiculous.

You have chronic inflammation of both your small bowel and stomach. You have villous blunting and atrophy. You have damage in your esophagus that suggests reflux.

And then you try the diet and feel so much better.

What else does anybody need to give you a definitive diagnosis of celiac disease? Come on, I am just shaking my head here!

You have celiac disease. No question about it. Keep being on the gluten-free diet and ignore anybody who claims it isn't celiac disease.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I agree with the others, the doctor has much more sense than the pathologist. He is a keeper and I fully agree that you need to be on the diet as that was not a negative biopsy report.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thank you all so much for the input.I really just couldn't understand where the "negative" reading came in....unless it might be negative of any cancer?? The diet is helping so much...there can hardly be any doubt.You wonder how many histology reports/blood tests come back negative when they are indeed positive....scarey stuff!So many people's futures are in the hands of the person reading the reports.

This sentence in the "comment" section made me wonder me,as well.

"The findings are non-specific and not diagnostic of celiac sprue"

Am I understanding this right.....that celiac and celiac sprue are different?I was under the impression that celiac sprue was really late into the disease with not much hope of reversal of damage.


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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"Celiac sprue" is just another name for celiac disease. It is also known as non-tropical sprue and gluten-sensitive enteropathy. All four of these terms (and some rarer others) refer to the same medical condition.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I did a google search for "blunted villi", looked at a few of the hits and found this:

Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data.

Combining that with the comment on your report it sounds as if the doctor did not find anything to allow a definitive conclusion about what damaged your villi. The "Intraepithelial Lymphocytes" were what the lab test was looking for that would have been the definitive evidence of gluten caused damage.

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Really, who is the ignorant person who read this report and claimed there is no evidence of celiac disease? That is utterly ridiculous.

You have chronic inflammation of both your small bowel and stomach. You have villous blunting and atrophy. You have damage in your esophagus that suggests reflux.

And then you try the diet and feel so much better.

What else does anybody need to give you a definitive diagnosis of celiac disease? Come on, I am just shaking my head here!

You have celiac disease. No question about it. Keep being on the gluten-free diet and ignore anybody who claims it isn't celiac disease.

I agree. I'm sure many have seen this before, but this doctors states right up front that atrophy of villi is part of celiacs

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Once again........thanks for all the input.It does seem odd to me still...negative biopsy...blunted villous?? I feel like the doctor would not have ordered me to start the diet, inform siblings,see a dietican etc.....if he felt like there was no reason to suspect celiac. We'll see in August,if the villi are still blunted.I hope that's not too soon for the second biopsy.I know everyone heals at a different rate. The worst that can happen is a healthier summer than normal.

Thanks for the help


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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I was thinking about this last night and I am wondering if the line at the bottom may have been an error, perhaps by the transcriptionist. The reading of the biopsy clearly shows impact which makes me wonder if there might have been an error in the transcription. Your doctor obviously recognizes that it was a positive biopsy, have you asked him to explain that line? I would make a call to the office and see if you can get him or a nurse to call you back and clarify. You may find the 'not' was a typo.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I was thinking about this last night and I am wondering if the line at the bottom may have been an error, perhaps by the transcriptionist. The reading of the biopsy clearly shows impact which makes me wonder if there might have been an error in the transcription. Your doctor obviously recognizes that it was a positive biopsy, have you asked him to explain that line? I would make a call to the office and see if you can get him or a nurse to call you back and clarify. You may find the 'not' was a typo.

The doctor says...via the nurse: The villous blunting and atrophy could also be caused by an acid reflux problem. If that is the case,I had heartburn for about 4 months only (out of 50 years) prior to the scope.Heartburn has never been a huge issue for me...other than Jan-April of this year.I will at times be bothered by it still today...but not very often or very bad.I didn't know that a relatively short episode of heartburn could cause villi blunting and atrophy?? I suppose that is why the "suggestive of reflux esophagitis" was reported in his findings. Maybe I have both problems ....acid reflux and celiac.

Oh and the nurse highly doubted my typo theory....afterall we know that doctors never make mistakes!! Yea right!


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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Yea I guess acid reflux could cause those findings, if the reason for the acid reflux is gluten. :) Many doctors would rather we take meds for reflux at least your advised you do the diet, at least your doctor advised you to try the diet for relief. That reflux will most likely be a thing of the past soon. If you haven't already you may want to exclude or limit dairy for a bit. It may help you heal faster.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Pathology is a complex sub specialty. The reason that lymphocytes are speciifically mentioned is because they were not seen, Autoimmune disorders like celiac have lymphocytic infliltration at the site of damage - in pathology - if you see those cells it tells you with certainty that it is celiac. If they are not seen, then other causes have to be considered- as Tim-n-VA provided in his post.

The doctor acted appropriately as he had other lab data that the pathologist did not - and went to the most likely cause - gluten.

Pathology reports can be confusing - a lot of medical charting and reporting makes you scratch your head at times.

My favorite is the tag attached to an oxygen tank : Not flammable but greatly increases combustion :unsure::blink:

kind of like - gluten isn't harmful unless you eat it ;)

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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