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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Sarahsmile416

Explanation Of Biopsy?

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Finally back from a long extended vacation...back to reality. To give a short history, had a biopsy done back on Dec 19- got results back on Dec 21st. Nurse (not doctor) phoned and told me I did not have any evidence of celiac but to start taking aciphex for the acid reflux (never mind that that was not my presenting problem). I called them after Xmas and explained that while I would take the aciphex for the reflux, that was not what I presented with. She told me that the acid reflux caused the inflammation in my intestines and duodenum and by taking the aciphex everything would disappear. Meanwhile, I told her I was going to go on a gluten free diet to see if my symptoms improved which she failed to understand. I had to arm wrestle them to give me another appointment - so to me it's clear they were just going to take one symptom and use it to explain another and just conveniently forget the others (2 other autoimmune diseases, loss of enamel on my teeth dating back years, keratosis pilaris, etc etc).

Anyway, I read the doctor's explanation of the biopsy...and I say explanation very lightly because for 8 samples there is almost nothing in the way of explanation.

Here is what it says: gastritis was noted. Inflammation of the stomach noted. It was mild. Biopsies for H, pylori bacterial infection were negative.

Esophagitis was found. The severity was mild. Inflammation due to the presence of acid reflux has caused inflammation on the lining of your esophagus. There is no evidence of pre-malignant changes.

Other comments: inflammation of the duodenum was seen but no evidence of celiac disease. The inflammation could be secondary to acid secretion.

Any ideas, comments, pearls of wisdom regarding the "explanation"?Should I keep my appointment with the doctor or just leave well enough alone?

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Make the doctor give you some sort of "explanation" as to what IS causing the acid reflux which is causing the damage.

Then you have 2 choices. You can either go on one of these wild-goose chases, take the meds, and go on one of these heartburn diets where you eliminate all these different acidic, spicy, fatty, dairy, and fried foods that supposedly cause acid reflux, (and likely won't work, because you are supposed to eat grains on this), or you can go on a gluten free diet and see what happens, which has just as good a chance of working, because you have certain symptoms of celiac and associated conditions that go along with it. And celiac and gluten intolerance can cause ferocious heartburn and acid reflux. Before I went gluten free, my diet got more and more restrictive, and I was told to take various otc heartburn meds, like tums, (not a good idea) but I was eliminating the wrong types of proteins, eating more grains because it was supposed to be "healthier," :ph34r: and the various acid blockers didn't do anything except give me some strange side effects, so I had to stop them. Now, other than avoiding gluten, I eat a lot of the foods that were supposedly giving me heartburn back in the 1980's, and have no reaction to them and don't have heartburn. It was very strange to discover that I could, if I wanted to, eat something like a gluten free pancake or gluten free french toast, with some coffee, and an orange, and have no reaction to it - I was using just almond meal to make things in the beginning.

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That sounds like the doctors procedure report? Get a copy of the pathology report. See if the pathologist saw any evidence of Celiac.

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Is that easy to get a hold of? Also, does that often happen that the pathologist sees celiac but the doctor does not/and/or reports something else?

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Is that easy to get a hold of? Also, does that often happen that the pathologist sees celiac but the doctor does not/and/or reports something else?

Ask the doctor for a copy of it. It will tell you if he even did a biopsy. My GI claimed he biopsied something but there was no path report for it so I know he didn't. When I worked in health care, there are plenty of surgeons that do not list what was found on the path report. Partially because an operation/ procedure report is done before the pathology comes back.

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Wow! That's pretty shameful! My GI claimed she got 8 samples...but really with the quick turn around on the report and the tidy little "explanation"-- and based on what you are saying, no I'm doubting a biopsy was actually done.

So are you saying that the pathologist report will confirm whether or not a biopsy was actually done? Does that mean if there was one done there will be a report and if there wasn't, there won't be?

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Yes, a pathologist is required to do a report, noting the number of samples received, a description of their physical appearance, and a report on what he sees under the microscope. :)

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Well, that kind of confirms that she sent the procedure report before the pathologists report because I know she sent it on Friday the 21st...for some reason I truly doubt the pathologist had completed 6-8 biopsies by that point. I guess it's possible, but it seems a little hard to believe. This whole thing has really soured me on some of the medical profession, that's for sure !!

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Well, that kind of confirms that she sent the procedure report before the pathologists report because I know she sent it on Friday the 21st...for some reason I truly doubt the pathologist had completed 6-8 biopsies by that point. I guess it's possible, but it seems a little hard to believe. This whole thing has really soured me on some of the medical profession, that's for sure !!

Ideally, a surgeon or GI would make his procedure/operation report right after the procedure, while its fresh in his mind. Then he would either add an addendum to the report to include the path findings, or a separate "discharge summary" or a note that sums it all up. With these outpatient type prodecures, this final note might not be as formal as the one after a long inpatient stay. Many GIs will write a sumnation letter to your primary care doc that can take its place. He should be able to give you a copy of that if that is his summary or you could discuss it with your primary doctor.

either way, ask for an actual copy of the path report. It should include a description of what the samples are labelled which will have the size and location, some hard to understand stuff about how it was looked at and what was seen and a conclusion or diagnosis. 1-2 pages would be average. when you get it, you could copy it here if you want.

want to add: Usually you would expect about 2 days to get the report. This was right before Christmas so they might have tried to get them out quicker to get a day off or there weren't as many specimens to look at because no one wants to do elective procedures right before a holiday.

Edited by kareng

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I understand...and will definitely make sure to ask for the pathologist report...what I am a little skeptical about is her admittedly unsure statement about the inflamed duodenum. She even admits in her report that it could be from the acid reflux but also might not be. Why not wait until she gets the pathologists report back to say something?

Also, why was I not told about the gastritis when I was originally called? I didn't even know it was "noted" until I read the note.

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A little update. Went to the doctor today and was pleasantly surprised. Apparently it is just her nurse who is a moron...I did find it funny that the nurse wanted as little to do with me as possible after I excoriated her on the phone.

The doctor on the other hand, when I told her I was still having problems she said that I might easily be gluten intolerant (which, duh, but from what I have read on here, she seems to be one of the few doctors who acknowledge it!) and given the amount of inflammation I showed I should give up dairy for awhile. I was just very happy to hear my doctor parrot what I have been reading on here! I have also been doing my food diary all wrong - only recording major reactions and not minor ones, whoops!

Anyway, I asked her for the pathologist's report and she gave it to me. Shorter than I expected (2 pages), but shockingly some things were done that I did not expect (they DID test for eosinophils, which were not present).

Here it is, in most of its entirety:

Clinical impression: Abnormal mucosa in duodenum; normal mucosa entire stomach; erythematous esophagus.

Gross description: Received in zinc-formalin are six fragments of red-tan soft tissue measuring 0.9 cm x 0.6 cm x 0.2 cm in aggregate.

Received in zinc-formalin are two fragments of red-tan soft tissue measuring 0.4 cm x 0.3 cm x 0.2 cm in aggregate.

Received in formalin are two fragments of soft tissue measuring 0.3 cm x 0.3 cm x 0.1 cm in aggregate.

Miscroscopic description:

Small bowel mucosa with foveolar metaplasia and Brunner gland hyperplasia. Giardia and other parasites not identified.

Foveolar cell hyperplasia, edema of lamina propria and minimal inflammation. No evidence of intestinal metaplasia, malignancy or dysplasia. H.pylori not present.

Esophageal mucosa with basal layer hyperplasia and elongation of esophageal papillae. Eosinophils are not present. There is no columnar mucosa present.

Final diagnosis;

Duodenum, Biopsy with Cold Forceps:

Chronic duodenitis with focal foveolar metaplasia and Brunner gland hyperplasia.

No evidence of celiac sprue.

Giardia not identified.

Stomach, biopsy with cold forceps:

Reactive (erosive) gastropathy

Silver stain negative for H.pylori

Distal esophagus, Biopsy with cold forceps

Hyperplastic squamous mucosa most consistent with chronic reflux esophagitis.

There are no eosinophils present.

No evidence of Barrett's esophagus; no glandular mucosa present.

Phew!! Anyone able to decipher the medical speak for me?

Thanks!

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