Prep for celiac biopsy??

[MeekoTheRacoon]

I think my GI doctor is not taking my celiac testing seriously, however with the current covid circumstances, I just don't have the time to seek another doctor. 

After having gastro symptoms (frequent diarrhoea, occasionally mucus in stool, a lot of undigested food in stool, rash patches on parts of my body), my GI gave me a celiac blood test but didn't tell me I'm meant to eat gluten before the test? I generally am a very light gluten eater. Test came back with positive gene, but negative antibody. She says I need to now have colonoscopy/endoscopy because the blood test can sometimes be inaccurate but she believes I most likely have IBD...

 

She has not told me that I need to eat any gluten before the scopes and for how long a period of time?! Can someone please tell me how much gluten I should be eating and for how long? 

 

Also, can I ask, are there usually any indicators in your bloodwork for celiac? I have otherwise perfect blood results, so just wondering if that's why she isn't overly concerned about it?? 

 

 

 

[GFinDC]

Hi MeekoRacoon,

Many doctors seem to sleep through the part of med school where they teach about celiac disease.  Failure to properly advise for celiac testing is common.  You do need to be on a  daily gluten diet for 8 weeks before blood antibody testing per the University of Chicago Celiac Center.  They even have a formula on how to calculate the amount of gluten to eat based on body weight.  But a slice of gluten bread is probably plenty for most people.

There are several antibody tests in the complete celiac disease panel.  But often a single test is given initially.  That is fine except some people test negative on that screening test even though they have celiac disease.  Celiac testing is not perfectly accurate yet.

An endoscopy is often the 2nd part of the diagnostic process.  They should take 4 to 6 biopsy samples of the small intestine for microscopic review.  In severe damage cases, they can see it during the endoscopy.  But more often a microscope is needed.

There is an itchy rash related to celiac disease called dermatitis herpetiformis (DH).  DH usually appears symmetrically on the body, i.e. both elbows, knees, etc.  They test for DH by taking a skin biopsy from adjacent to a blister.   People with DH are making antibody deposits in the skin.  So the  usual blood antibodies may not show up.

People with celiac disease often develop vitamin/mineral deficiencies over time.  That is due to malabsorption caused by small intestine damage.  But that isn't typically an early stage problem.  Some common absorption problems are vitamin D and B vitamins and some minerals.

Welcome to the forum!

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Edited April 23, 2020 by GFinDC

[cyclinglady]

I think GFinDC left this out.   Consume gluten daily for 2 to 4 weeks before the endoscopy.  This is imperative!  If your endoscopy is scheduled out for a few months out, take the time to consume gluten daily and insist on a repeat antibodies test (full panel) on the day of the endoscopy or just a day before or after.  

Please research a gluten challenge and take that information into your GI.

 https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Why a full panel?  Some celiacs like me do not test positive to the standard screening TTG test.  I test positive to only the DGP IgA.    And some celiacs are seronegative.  

I thought for sure my niece had celiac disease, but a pill camera caught her Crohn’s diagnosis.  Her damage was beyond the reach of both scopes.  So, keep an open mind.  I never would have suspected celiac disease for me.  

Keep all your medical records.  It will be handy in the future.  

Take care.