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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Biopsy Results-Celiac &/or Lymphoma
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12 posts in this topic

Hello, my husband has been sick for 2 yrs with extreme fatigue, weight loss, nausea, abd pain, diarrhea and constipation. Had a colonoscopy and EGD 6 weeks ago and we got the biopsy results yesterday. GI doc said he was puzzled and needed to consult with "someone smarter than me". Is sending slides to Mayo Clinic. I have a copy of the pathology report and have spent many, many hours researching every word of it...appears to be pointing to celiac disease that may have already progressed to lymphoma...wanted to get the opinion of others who have been down this road before. Here is what the path report says (kind of long, sorry!):

"Diagnosis: small bowel bx-lymphocytic enteritis with partial loss of villi. Stomach-lymphocytic gastritis, no h-pylori. Esophagus-squamous mucosa with changes of reflux. Cecum-colonic mucosa with non-specific changes of mild injury and non-specific lamina propria. Trans colon-colonic mucosa with non-specific changes of mild injury and non-specific lamina propria. Sigmoid colon- colonic mucosa with non-specific changes of mild injury and non-specific lamina propria hemorrhage, no submucosa. Rectum-colonic mucosa with non-specific changes of mild injury and non-specific lamina propria hemorrhage, no submucosa. Microscopic description: Small bowel-Villi, some with loss of height and flattening, bear excess intraepithelial lymphocytes, CD3 positive, over 40 per 100 enterocytes. In stroma strew lymphocytes and plasma cells, some about non-dilated lymphatics. Stomach-Sydney score: Antrum/Fundus. Foveolar hyperplasia: none. Neutrophils: none. Mononuclear cells: Moderate. Atrophy:none. Extravasated erythrocytes:none. Increased epithelial cellularity requiring CD3 stain: Present. Dilated pits:none. Stains with good control: PAS AB-no signet ring cells or intestinal metaplasia; IHC for h-pylori-no organisms; IHC for CD3-increased intraepithelial lymphocytes. Esophagus-squamous epithelium with basal layer hyperplasia, papillary thickening, rare intraepithelial eosinophils and balloon cells tops stroma strewn with chronic inflammitory cells. Cecum- a wavy luminal border lacking its usual mucin tops focally edematous mucosa with focal pooling of extravasated erythrocytes and lymphoid aggregates in lamina propria. Lacking are other inflammatory and neoplastic changes and submucosa. Transverse colon- a wavy luminal border lacking its usual mucin tops focally edematous mucosa with focal pooling of extravasated erythrocytes and lymphoid aggregates in lamina propria. Lacking are other inflammatory and neoplastic changes and submucosa. Sigmoid colon-a wavy luminal border lacking its usual mucin tops focally edematous mucosa with focal pooling of extravasated erythrocytes and lymphoid aggregates in lamina propria. Lacking are other inflammatory and neoplastic changes and submucosa. Rectum- a wavy, partly avulsed luminal border lacking its usual mucin tops edematous mucosa with focal pooling of extravasated erythrocytes and lymphoid aggregates in lamina propria. Lacking are other inflammatory and neoplastic changes and submucosa."

So....any thoughts? What does all this mean? Is this a typical biopsy for celiacs or are we probably looking at something else?

Thank you for your input!

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What is it about the report that makes you think that it's already progressed to Lymphoma?

I have yet to have my biopsy, but I am a medical professional (not a doctor). I am used to reading reports, and based on the overall diagnosis listed, it sounds like inflammed bowel with signs of celiac to me. "Lymphocytic enteritis" is an inflammation of the bowel, and from what I understand the damage to the villi is a sign of Celiac.

There is alot of verbage there that discribes in detail what is seen, and most of it is just a standard form of text that is used to make writing reports easier. The important things are typically listed in the diagnosis or impression sections of a report, in my experiance.

It will be interesting to see what the Mayo guys say. Good luck!

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Please copy and paste which part suggests your husband has lymphoma. The only places I see the prefix "lymph" is when speaking of lymphocytes.

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What is it about the report that makes you think that it's already progressed to Lymphoma?

I have yet to have my biopsy, but I am a medical professional (not a doctor). I am used to reading reports, and based on the overall diagnosis listed, it sounds like inflammed bowel with signs of celiac to me. "Lymphocytic enteritis" is an inflammation of the bowel, and from what I understand the damage to the villi is a sign of Celiac.

There is alot of verbage there that discribes in detail what is seen, and most of it is just a standard form of text that is used to make writing reports easier. The important things are typically listed in the diagnosis or impression sections of a report, in my experiance.

It will be interesting to see what the Mayo guys say. Good luck!

What made me think possible NHL was the lack of submucosa combined with lymphoid aggregates in the lamina propria. I forgot to include the pathologist's comments from the report:

"Changes in the small bowel specimen may represent Marsh type II sprue, but other etiologies can exhibit increased intraepithelial lymphocytes in the small bowel, including infections (Giardia, Helicobacter, Cryptosporidium, viruses), food allergy, drug reactions and immune system abnormalities; artifactual focal villous flattening can occur. Correlation with serologic findings is important."

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Also the part about "lacking its usual mucin tops focally edematous mucosa with focal pooling of extravasated erythrocytes and lymphoid aggregates in the lamina propria"...

When we talked to the GI doc, he mentioned lymphoma as one of the many possible diagnoses and said that the biopsy was not "cut and dry" for celiac disease...

So, what parts of the pathology results are not typically seen with celiacs and which parts are??? I'm so confused and worried!

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Lymphoma is a cancer of the blood and lymphatics system.

Lymphoid aggregates in the lamina could be read in layman's terms,

Forget it. lymphoid aggregates are common and need no treatment. I see nothing that makes me suspect lymphoma.

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I am certainly not a doctor and do not understand the findings; however, the pathologist suggested several other causes for the findings, none of which mention lymphoma. He said that correlation with serologic findings was important. Did your GI suggest doing the celiac blood panel for celiac correlation?

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Lymphoma is a cancer of the blood and lymphatics system.

Lymphoid aggregates in the lamina could be read in layman's terms,

Forget it. lymphoid aggregates are common and need no treatment. I see nothing that makes me suspect lymphoma.

MALT Lymphoma of the colon and intestinal lymphoma were the types that my research pointed to and they have pathology results very similar to what my husbands showed AND the GI dr mentioned intestinal lymphoma yesterday as a possible diagnosis...

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I am certainly not a doctor and do not understand the findings; however, the pathologist suggested several other causes for the findings, none of which mention lymphoma. He said that correlation with serologic findings was important. Did your GI suggest doing the celiac blood panel for celiac correlation?

The GI dr did not suggest any further testing at this time...we are to call him back towards the end of next week, after he has had the chance to talk to the people at the Mayo Clinic.

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The GI dr did not suggest any further testing at this time...we are to call him back towards the end of next week, after he has had the chance to talk to the people at the Mayo Clinic.

Call the doc and tell him you want a celiac panel done if it hasn't been done already. The doctor works for you and with the Marsh scale being mentioned in the report he should have already done it. I am not a doctor but from what I have seen on scope reports it looks much more likely that what you are dealing with is celiac not lymphoma. It is good that he is consulting with other doctors on this as yours may not be all that familiar with the findings of celiac.

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Here is what the report is talking about, note it said more than 40 IEL per 100

http://www.thefooddoc.com/celiac_biopsies_photos

"Lymphocytes are a type of white blood cell important in immune function. The typically appear as purplish circles on standard H&E type stain of intestinal tissue obtained from biopsy.

· Specialized lymphocytes are present in the intestine lining.

· The intestinal lining cells are called enterocytes and are a type of epithelial cell.

· The intestinal lining is an epithelial lining.

· Lymphocytes that are activated and migrated up from crypts at the base of the intestine villi to the tip are called intra-epithelial lymphocytes.

· Normally, there are much fewer than 25-30 lymphocytes per 100 enterocytes in each villous or < 9 per villous tip.

· For thirty years, more than 40 IEL’s/100 enterocytes was considered abnormal and diagnostic of Celiac in the context of appropriate history and abnormal celiac blood tests. It is the number still used by many pathologists.

· More recently, 30 intra-epithelial lymphocytes per 100 enterocytes (6 or more IEL’s per 20 enterocytes) became the accepted criteria for intra-epithelial lymphocytosis and diagnosis of Celiac disease when villous blunting or atrophy are absent but blood tests are positive.

· IEL’s are easier to see and count with special immune chemistry stains.

· See the special stain photograph above showing increase IEL’s in a villous tip in Celiac disease. The IEL’s are brownish red with this particular stain whereas normal intestinal cell nuclei are purplish.

· Sometimes this stain is necessary to determine IEL’s from normal intestinal nuclei and better determine the number, especially if someone has already restricted gluten in their diet.

Studies have shown that apparently normal appearing small intestine biopsies when stained with special stains for IEL’s reveal abnormal numbers as the earliest sign of gluten injury, especially in high risk individuals like family members of people with Celiac disease"

and more here:

http://www.thefooddoc.blogspot.com/

note there is something about eosinophils too.

There have been several reports of ee together with celiac here.

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I am not a doctor either but it sure sounds to me like the report suggests celiac and not lymphoma. If you google some of the terms they used it might help explain. Like lamina propria or muscosa and neoplasmatic. The report said no nespasmatic signs so that is good, as the nesplasma is a :

Neoplasm is an abnormal mass of tissue as a result of neoplasia. Neoplasia ("new growth" in Greek) is the abnormal proliferation of cells. The report said no neoplasma and that is good.

Neoplasm

The Marsh scale is used to evaluate the amount of damage to villi in the intestine. Damage to the villi is associated with celiac disease.

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