Help with pathology report

[Stringcheese32]

ANATOMIC DIAGNOSIS: A. Duodenum, biopsies: - Duodenal mucosa with no specific pathologic features. - No evidence of celiac sprue. EBG 12/23/2016 HISTORY /CLINICAL DIAGNOSIS: Chronic abdominal pain. GROSS DESCRIPTION: Duodenal biopsies The specimen consists of 12 portions of tan soft tissue ranging in size from 0.1 to 0.6 cm in greatest dimension. 4C12NS. LB/slw 12/22/16

 

Clearly it's saying no evidence of celiac disease, but I was wondering if this is saying 12 biopsies or somewhere in here, where they were taken specifically (distal duodenum and duodenal bulb is what I'm looking for).

The office called and told me I could keep eating gluten if I wanted to or stop eating it - it's up to me and I have an appointment for mid February to discuss these results and where to go from here.

Does this seem absurd?  

I asked if repeat testing of the DGP IgG would be a good idea at this point to rule out a false positive and she said they will not be doing anymore testing at this point, but maybe at my next appointment.  

 

[Stringcheese32]

Also, has anyone else experienced positive DGP IgG labs, positive genetic testing but had a negative endoscopy?  And, if so, how was the situation handled?

Thanks!

[ravenwoodglass]

Since you had positive blood work and genetic testing a good strict trial of the diet is in order. If memory serves that test is specific to celiac. Perhaps talk to the doctor about retesting your antibodies in 6 months to see if they go down on the diet and your symptoms improve. 

[Stringcheese32]

  On 1/6/2017 at 11:17 PM, ravenwoodglass said:

Since you had positive blood work and genetic testing a good strict trial of the diet is in order. If memory serves that test is specific to celiac. Perhaps talk to the doctor about retesting your antibodies in 6 months to see if they go down on the diet and your symptoms improve. 

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Thank you for your reply!  I mentioned this to his assistant on the phone and they didn't seem interested in doing such until after they finish lactose and fructose intolerance testing which won't be done until Mid February.  I just don't want to keep consuming gluten as I know I feel better when I don't consume it.  I had to be gluten, dairy and soy free when I was breastfeeding my children as they reacted terrible to it in my breast milk.  I notice I bloat incredibly, am nauseated, and makes my constipation even worse.  I thought my bloating was due to my constipation, but I noticed when I consumed large amounts of gluten I looked pregnant again.  The only reason I decided to have the endoscopy was I was hoping for a definitive diagnosis for my three little girls who struggle with GI issues.

 

[ravenwoodglass]

The doctor may give you a diagnosis after your symptoms resolve and your antibodies go down.  Celiac savvy doctors know that damage can be patchy and be missed. That may have happened with you.  Being gluten free isn't going to impact testing for other issues and since your appointment is over a month away you may find being gluten free resolves those issues and the other testing isn't needed.

[ironictruth]

  On 1/6/2017 at 11:00 PM, Stringcheese32 said:

Also, has anyone else experienced positive DGP IgG labs, positive genetic testing but had a negative endoscopy?  And, if so, how was the situation handled?

Thanks!

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I had A weakly positive DGP IGA And a negative biopsy last year. DQ2.  This past summer I had a moderate positive combined DGP test where they combined the IGA and IGG In one test.  oddly when they separated the test and ran it again they both came out negative. I had just inflammation in that biopsy. That was on a gluten-free diet.

 A celiac disease specialty Research Center i went to told me that the DGP test would often come back positive for children who ended up having a negative biopsy so they started using other DGP tests from different companies to see what happened. 

 I'm not entirely sure anybody has this figured out. I had found a paper talking about children, young infants, who tested positive to DGP and Their DGP later went negative while eating a gluten containing diet. HOWEVER,  what was problematic according to the study was that these children'S parents were seeking assistance  because they had symptoms that so closely match celiac disease.  

 I have resumed eating gluten again And will be doing follow-up testing.  I will keep you posted on what happens Because it sounds like you're in a similar boat to me.

 I cannot recall, do you happen to have any thyroid issues?

 

 

[GFinDC]

  On 1/6/2017 at 11:49 PM, ravenwoodglass said:

The doctor may give you a diagnosis after your symptoms resolve and your antibodies go down.  Celiac savvy doctors know that damage can be patchy and be missed. That may have happened with you.  Being gluten free isn't going to impact testing for other issues and since your appointment is over a month away you may find being gluten free resolves those issues and the other testing isn't needed.

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I agree mostly.  The only thing I'd suggest is the lactose intolerance test may be affected if the lactose intolerance is caused by celiac damage and she goes gluten-free before the lactose test.  Since lactose intolerance can be caused by celiac damage,  if she goes gluten-free now there is a possibility her villi will heal enough to eliminate the lactose intolerance before the test.  I am not sure if her doctor would see a change in lactose intolerance after going gluten-free as a celiac indicator or not.  I sure think it is an indicator, but it's hard to tell what the doctor will say.

 

 

[Stringcheese32]

  On 1/7/2017 at 11:55 AM, ironictruth said:

 

 "I cannot recall, do you happen to have any thyroid issues?"

I do.  I was diagnosed with Hashimoto's Thyroiditis in 2012.  

 

 

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[ironictruth]

Lots of folks with Hashimoto's eat gluten-free. 

There is also T3 expression and thyroid cells in the gut. I kind of wonder if the intestinal villi are just in the way and the antibodies are really after the thyroid cells and for some folks it just takes awhile for that attack to occur in the intestine while others it occurs before the actual thyroid is attacked.

Keep me posted and I will do the same. I have an enlarged isthmus on the right, small thyroid nodule, pain, and an enlarged adjacent lymphnode. The pain started at the tail end of a 6 week gluten challenge. My previous doc did not run all the right tests for thyroid so I am waiting for an endo. 

I would encourage you to find a celiac specialist if you can.