Biopsy came back as inflamed but negative. Can someone help me figure out what to ask to ensure they properly did the biopsy?

[Emma84]

So I really thought I had celiac bc I have had VERY severe reactions from what would have been trace amounts of gluten (on the floor unable to walk with bad abdominal cramps and rounds of diarrhea for hours). In general, gluten seems to upset my stomach, although not always to that degree. 
 Blood test showed very elevated IgG gliadin antibodies.

 

they called with biopsy results and said it was negative for celiac. I asked if they found anything and they said just some inflammation. 
 

they diagnosed me with ibs and gluten intolerance. 
 

I find it difficult to believe that an intolerance would cause that level of reaction to such a small amount of gluten.

 

I also am not bothered at all by high FODMAPS foods, artificial sweeteners or carbonation which is typical of IBS. 
 

so basically, my question is 2 parts :

 

1) are there any clarifying questions I should ask about my biopsy to ensure that there is no celiac or gluten related damage? Maybe it wasn’t to the point of celiac but they found something? Is there any other information or diseases that could show on a biopsy that I should ask about? I don’t really know what they look for aside from the villi, is there another part of the biopsy that might provide some information that I should ask about? 
 

 

2) any advice on where to go from here? I am of comfortable labeling it as an intolerance/Ibs without eliminating more than just celiac based on the severity of my symptoms and the amount of distress they cause me. What can mimic celiac? I would appreciate any advice on tests to request or how to proceed from here. 

[Scott Adams]

It's always a good idea to get a copy of your biopsy results, and feel free to share them here. Normally 4-6 samples should be taken during an endoscopy to diagnose celiac disease, and biopsy samples are typically taken from the small intestine. Specifically, the biopsy samples are obtained from the duodenum, which is the first part of the small intestine. Were you eating gluten daily for at least 2 weeks before the biopsy?

Was this the high blood test you had Gliadin Peptide Antibody IgG (Immunoglobulin G)? If so, this would not be the normal way to diagnose celiac disease, and a full blood panel should be done. You would need to continue eating gluten daily for 4-6 weeks before this.

Your official diagnosis presently sounds like it is non-celiac gluten sensitivity, and if so, you'd still need to go gluten-free.

 

[knitty kitty]

Hello, @Emma84,

One statement you made on another thread...

"I’ve been gluten free for 2 years, then ate for 5 weeks prior to bloodwork and it will be 6 weeks for endoscopy. Should that be accurate?"

During a Gluten Challenge recommendations vary about the amount of gluten to consume... from 3-10 gm of gluten a day, (equivalent to approximately 4-6 slices of bread a day) for 6-12 weeks.

Since you were gluten free for such a long period before your challenge, your immune system may not have had ample time to launch an autoimmune response large enough to be picked up in the blood, despite having symptoms.  

Not eating a sufficient amount of gluten daily is also a concern.  Apparently 3 grams of gluten per day for several weeks will not produce intestinal damage.  Villi damage is seen with 10 grams of gluten per day.  

You could continue eating gluten for a number of additional weeks and get your blood antibody levels retested.  Discuss this with your doctor.  Another endoscopy may be indicated if your antibodies show up higher.  

A DNA test for the most common Celiac Disease genes may give you further clarification as to whether Celiac or another direction should be pursued.  Having Celiac genes shows you are more likely to develop the disease.  Genes for Celiac does not mean you have active Celiac Disease.  Not all Celiac genes are known, though.