biopsy doesn't show coeliac disease

[jomarks]

Hi,

I had an endoscopy on Friday, and the histology report received today doesn't show Coeliac Disease. Has anyone else been in a similar position with these results?:

DGP IgG: 82 (<15)

DQ2 phenotype: positive

Histopathology Report: Transitional/antral mucosa is diffusely but mildly oedematous with scattered interstitial mononuclear inflammatory cells and eosinophils accompanied by vascular ectasia.

Duodenum - normal.

I didn't want to have Coeliac Disease, but that diagnosis seemed to fit the long term symptoms I've had. I really don't know what to do now. Any advice or similar circumstances out there?

Thanks, Jo

PS I'm in Australia, so some of the test results have different reference ranges to what I've seen on here.

[SLLRunner]

How many biopsies were taken of your upper intestines? 

[jomarks]

Hi SLLRunner,

1 of  stomach and 3 of duodenum,

Jo

[cyclinglady]

Your results are odd (welcome to the odd club which includes me!!)  First, the small intestine when laid out flat is the size of a tennis court, so it's super easy to miss damaged areas.  It is good that your doctor took at least four samples. 

Your results for the DGP IgG are odd.  Did they run the DGP IgA?  Are you IgA deficient?  Was that tested?  Exactly which celiac blood tests were given?  (You just listed the genetic result and the one DGP IgG that was positive.)

Here are some links to research:

Open Original Shared Link

Oh, I tested negative to the TTG tests.  I only had a positive to the DGP IgA test (the IgG version was negative), but my biopsies showed moderate to severe damage.  My main symptom really was anemia. 

Having just a positive on one of the DGP tests occurs in small children (odd, because I am old)!  

Open Original Shared Link

Open Original Shared Link

What exactly were your symptoms that led you and your doctor to test for celiac disease?  

 

 

[frieze]

a dedicated trial of the gluten free diet is the only true test...

[SLLRunner]

31 minutes ago, frieze said:

a dedicated trial of the gluten free diet is the only true test...

Well, this only tells you whether you are sensitive to gluten, not whether you have celiac. Anybody who finds themselves sensitive to gluten should talk to thier doctor frankly (a lesson I am just learning) about getting tested, and for tests you need to be eating gluten.

[jomarks]

Thanks for your responses!

The tests I had done were:

Endomysial antibody - negative

Tissue Transglutaminase IgA - 1 (<15)

Total Serum IgA - 3.05 (0.69 - 3.10)

Deamidated Gliadin Peptide IgG - 82 (<15)

These results led to the genetic testing, which showed I had the DQ2 phenotype, and that led to the endoscopy which was done on Friday.

The tests were requested because over the last few months I have had severe fatigue, hair loss, joint/muscle pain and mouth ulcers. However, this is on a background of Anaemia (23 years), IBS (14 years), Anxiety (10 years) and more recently Vitamin D deficiency.

In saying all that, I have considered myself quite healthy until the most recent symptoms! I "just got" used to the IBS and my normal has been bloating, frequent bowel movements etc.

I stopped eating gluten as soon as I had the endoscopy (6 days ago) because I was so sure the diagnosis would be celiac disease (after reading many articles!) and have already noticed an improvement.

My main concerns for having a specific diagnosis are: 3 daughters who could possibly be affected, other auto-immune diseased in my family (sister) and my Dad passed away fairly recently from Non Hodgkins Lymphoma (with quite a lot of gastric involvement.)

Thanks for taking the time to respond,

Jo

 

 

[cyclinglady]

I wonder why your  doctor did not run the DGP IGA test?  You are not IGA deficient.  

Freize is right.  You can do the diet.  Give it at least six months.  it is definitely something to consider based on your family history.  

I have been googling.  Found an old posting.  I believe "Power of Thinking" had the same result as you.  If I recall, she ended up getting re-scoped and she did have celiac.  But do not hold me to that.  There are a lot of members here!   Will research more.  I am sure you are doing the same.  That is how you found celiac.com.  ?

 

[frieze]

perhaps you can get a "second opinion" on the biopsy slides?

[Karen Lynn]

Have you looked into Lupus? I ask because Hair loss, joint pain, and mouth ulcers are all common symptoms of Lupus. If you have a family history of autoimmune disorders and some of your antibody numbers are high, it might be good to look into that. Even if you do have celiac, you could have Lupus as well, since these autoimmune diseases often overlap.