Gut damage but blood test negative

[beckism]

Hi, I've suffered IBS symptoms and anaemia for a while, and the doctor has been referring me to lots of consultants to try and figure out what's wrong. Although I found wheat a big trigger for bloating, I'd never noticed a direct correlation with gluten, and a blood test at the start of this process tested negative for coeliac disease. Recently however, I had a gastroscopy, and was told my gut was very smooth with flattened mucosa in the duodenum, suggesting coeliacs. As far as I can tell from this forum, if there's damage to the villi then coeliacs is the cause. So, with a negative blood test, but with gut damage, does that mean I could still have celiac disease? 

Thanks for your help!

[cyclinglady]

Welcome!

Actually, many things can cause intestinal damage:

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But did you have the complete celiac panel?  I ask because I test negative to the common celiac disease screening test -- the TTG.  The TTG is good but does not catch all celiacs.  The others include the DGP and EMA (both IGA and IGG versions).  

[squirmingitch]

Also, did they do biopsies when they were in your gut? That's what they should have done & the biopsies get sent to pathology to determine celiac disease or not.

[beckism]

On 12/15/2016 at 8:07 PM, cyclinglady said:

Welcome!

Actually, many things can cause intestinal damage:

Open Original Shared Link

But did you have the complete celiac panel?  I ask because I test negative to the common celiac disease screening test -- the TTG.  The TTG is good but does not catch all celiacs.  The others include the DGP and EMA (both IGA and IGG versions).  

Hi, thanks for link! Nope, didn't have the complete celiac panel, just the common screening test. I guess I'll wait for results from biopsies, and then request the full one depending upon what they show. I think, given my symptoms, that most of the other causes of gut damage don't apply to me, unless it could be some other kind of food allergy.  (at least, I hope I don't have tuberculosis..!)

The doctor doing the procedure seemed to think my gut looked fairly typical for gluten damage, but the nurse did say it could be possibly be lactose intolerance or similar.

20 hours ago, squirmingitch said:

Also, did they do biopsies when they were in your gut? That's what they should have done & the biopsies get sent to pathology to determine celiac disease or not.

Yup, they did biopsies. The only reason I posted now (as opposed to actually having results!) was that the gut was visibly damaged (smooth), so that the doctor instantly mentioned that it looked like I was suffering gluten intolerance. If it's visible to the eye, would the biopsies be expected to be positive too? Or, is it possible to have what looks like a damaged gut, but is somehow healthy?

I know I should wait for my results, but it'll be ages now it's christmas, and I'm impatient to self-diagnose myself

[squirmingitch]

Uh YEH, if the doc could actually SEE that your gut was smooth through the scope that's big time!!! Shame on that nurse. Lactose intolerance doesn't cause villi damage. I would certainly imagine the biopsies will be positive with that extent of damage. 

[cyclinglady]

Nothing is ever easy as you well know.  A celiac disease diagnosis can very elusive.  I am sorry that you have to wait.  At least you had a visual.  I had moderate to severe damage that was not visible on my endoscopy.  So, you just have to wait for the biopsy results.  

If negative keep in mind that the small intestine, if stretched-out,  is the size of a tennis court and it is easy to miss damaged areas.  I would ask for the complete celiac panel to help rule out or confirm celiac disease as an elevated TTG could be attributed to something like Crohn's before going gluten-free.   If it is celiac disease, it is nice to have the DGP as a ....ugh words escape me .... But like a starting point as the DGP is often best for dietary compliance.  

[beckism]

18 hours ago, squirmingitch said:

Uh YEH, if the doc could actually SEE that your gut was smooth through the scope that's big time!!! Shame on that nurse. Lactose intolerance doesn't cause villi damage. I would certainly imagine the biopsies will be positive with that extent of damage. 

I might be doing the nurse an injustice. It's possible she said other food allergies but my mind jumped to lactose intolerance. Anyway, even if it's not coeliacs, something is definitely damaging my gut  

5 hours ago, cyclinglady said:

Nothing is ever easy as you well know.  A celiac disease diagnosis can very elusive.  I am sorry that you have to wait.  At least you had a visual.  I had moderate to severe damage that was not visible on my endoscopy.  So, you just have to wait for the biopsy results.  

If negative keep in mind that the small intestine, if stretched-out,  is the size of a tennis court and it is easy to miss damaged areas.  I would ask for the complete celiac panel to help rule out or confirm celiac disease as an elevated TTG could be attributed to something like Crohn's before going gluten-free.   If it is celiac disease, it is nice to have the DGP as a ....ugh words escape me .... But like a starting point as the DGP is often best for dietary compliance.  

Thanks cyclinglady! I do find this whole process quite confusing, but I guess with visible damage, something is upsetting me, I just have to try and figure out what! 

[SusanNash]

Have they tested you for Iga defiency? 

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I readon this site that can cause false negatives.

 

Quote

IgA deficiency, a condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result.