New & Need Help Interpreting Biopsy Results

[Carrie923]

I have been having RQ abdominal pain for over 2 months now. Ultrasounds & CT show everything is clear. Had an upper/lower scope last week and the results are posted so I can see them now but my Dr's appointment isn't for 2 more weeks. I'm confused about the results for the celiac biopsy and hoping to get help here to understand it better.

---Pathologic Diagnosis---

Endoscopic biopsies -

A - Duodenum - celiac:

Duodenal mucosa with normal villous architecture and increased

intraepithelial lymphocytes (SEE NOTE).

NOTE: The morphological findings are etiologically nonspecific and have

been described in patients with latent celiac disease, bacterial

overgrowth, viral gastroenteritis, in association with NSAID use or H.

pylori gastritis, tropical sprue, immunodeficiency syndromes, and more

recently also as a manifestation of duodenal involvement in Crohn's

disease. Clinical and serological correlation is recommended.

B - Gastric - h. pylori:

Gastric antral and fundic gland mucosa with nonspecific reactive

gastropathy. No H. pylori-like microorganism is seen.

C - GE junction 45 - Barrett's:

Squamocolumnar junctional mucosa (cardia type) with chronic nonspecific

inflammation. There is no evidence of intestinal metaplasia.

D - TI - Crohn's:

Ileal mucosa with reactive appearing lymphoid aggregates, consistent

with Peyer's patches.

E - Random colon - microscopic colitis:

Colonic mucosa within normal limits.

Also - what is <4.0 for TTG IgA? Seems mostly negative right?

Your Value Standard Range Units

<4.0 <=3.9 u/ml

[mommyto2kids]

My Dr. called me right away about my results. Can you call and have them at least tell you if you have celiac disease? Gosh I'd try that.

[jeanzdyn]

My gastroenterologist told me "we think that maybe you have celiac disease". How is that for a definitive answer!

The only thing is that I was not surprised to hear this diagnosis. A couple of years prior to the colonscopy I tried avoiding bread and pasta on a 3-day rotational basis. That is to say that I did not eat any bread or pasta for 3 days in a row and then, on the 4th day I would eat whatever I wanted to eat. I did this to alleviate severe itching --(just itching, no blisters, scabs, or inflammation was apparent at all). It relieved the itching, but it did make me start thinking about what the cause of the itching could be.

So, when the nurse said 'sprue' and the doctor said "maybe celiac disease" I was almost relieved.

Being gluten free has relieved a great number of my symptoms, so I am going with that --I have celiac disease -no maybe about it.

Pin the doctor down and make him/her explain the test results!

[IrishHeart]

I would call the doctor's office.

Why did they release the pathology report to you without interpretation? Ridiculous.

There are 3 things that I see here (but I am not a doctor, so I cannot tell you what they mean exactly)

(1) You have normal villous architecture (meaning no blunting) (but this is also consistent with LATENT celiac disease)

and

(2) "Crohn's: Ileal mucosa with reactive appearing lymphoid aggregates, consistent with Peyer's patches"

"Peyer's patches play a major role in intestinal immunity, are portals of entry for significant pathogens, and may be important in Crohn's disease."

Note the research says "may be" and "consistent with". Not that it means that is what you have.

and

(3)

"increased intraepithelial lymphocytes" (According to what I have read, it is not uncommon to find a raised intraepithelial lymphocyte (IEL) count with normal villous architecture in the duodenum.)

...which have been described in patients with latent celiac disease, bacterial overgrowth, viral gastroenteritis, in association with NSAID use or H.pylori gastritis, tropical sprue, immunodeficiency syndromes, and more

recently also as a manifestation of duodenal involvement in Crohn's disease.

and Clinical and serological correlation is recommended.

Meaning, they will look at all your symptoms, health history and your blood work to see what correlates with these pathology findings.

(H. Pylori, Barrett's esophagus and microscopic colitis seem to be ruled out in this report.)

To me, this means you COULD have latent celiac disease, an infection or Crohn's

or all or none of them. I have no idea of your history nor would I even begin to speculate further.

Call the doctor before you drive yourself crazy wondering what it means.

[Carrie923]

Thank you IrishHeart. I got my follow up moved from 6/22 to 6/11 so I'm excited about that. In agony right now so really hoping for some answers.

[ravenwoodglass]

Thank you IrishHeart. I got my follow up moved from 6/22 to 6/11 so I'm excited about that. In agony right now so really hoping for some answers.

You have had the blood work and the biopsy there is no reason for you to continue in agony. Go ahead and start a trial of the diet, strictly. You may get a bit of relief before you even go back for the followup.

[IrishHeart]

I agree with Raven.!!!

I would start my gluten free life and healing process right now.

Your celiac testing is done.

[Carrie923]

I guess I've been waiting for a definite yes or no that this is celiac or chron's related.

I'm still at the overwhelmed stage of thinking about a celiac diet. I need to read up more on how to really make the switch. I had a fruit shake for breakfast and will do a salad for lunch but am afraid I'm not up on the hidden glutens.

Do you guys understand that TTG IgA result I posted above? I have no idea what the <4.0 means.

[IrishHeart]

I guess I've been waiting for a definite yes or no that this is celiac or chron's related.

I'm still at the overwhelmed stage of thinking about a celiac diet. I need to read up more on how to really make the switch. I had a fruit shake for breakfast and will do a salad for lunch but am afraid I'm not up on the hidden glutens.

Do you guys understand that TTG IgA result I posted above? I have no idea what the <4.0 means.

?? No clue, sorry. It is not a full celiac panel report.

No worries about adapting to the gluten-free life.

You are in the right place to learn! We'll help.

Most people start with a whole foods diet, but incorporate Certified gluten-free foods into their diets. Make sure you get enough protein. Many people also dump dairy at first.

Start reading about celiac and the diet here:

Keep us posted after your doctor visit.

[MitziG]

Ttg is just one blood test for celiac out of the 5 or 6 that they SHOULD do. Your ttg was negative. Your biopsy is somewhat inconclusive. You have some indications of celiac or chrons- but nothing definitive.

Definitely try going gluten-free now. You have nothing to lose and it isn't as hard as you think. Start eating whole foods only- no processed stuff. If your symptoms abate you have your answer and you can be thrilled that you caught it before your intestines were completely ravaged!

[Carrie923]

Thanks!! What are the names of the other blood tests?

[IrishHeart]

There is no standardization in current tests. A number of tests, sometimes collectively referred to as the Celiac Blood Panel or Cascade, will aid in diagnosis. The tests may include, but are not limited to:

Serologic Tests

EMA (Immunoglobulin A anti-endomysium antibodies)

AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies.

DGP (Deamidated gliadin peptide antibody)

tTGA (IgA anti-tissue transglutaminase)

Deamidated gliadin peptide (DGP) antibodies tests developed in 2007 in combination with Tissue transglutaminase (TTG) antibodies and have better accuracy than native gliadin antibodies.

And some people, like me, test NEGATIVE but are celiacs nonetheless.