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Having Endo/biopsy Next Week


Mamatomy8

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Mamatomy8 Rookie

HI, I recently got the blood test drawn to test for celiac and am waiting for the results to come back. Next week I'll have an endo done. 

 

I have questions though, about it because I've read different things online. I have been on a somewhat low carb diet for a year or so. I'm not strictly gluten free, but honestly don't eat a lot of gluten except for weekends. Maybe a cheat once in a while during the week. So I guess you could say I eat a "low gluten diet". Now after researching about how celiac disease is diagnosed, I'm concerned I won't have enough gluten in my system for it to show up in the blood work or biopsy. Is that correct, or will it be fine? I keep seeing you have to eat 2-4 pieces of bread (or equivalent) for several weeks prior to a biopsy? 

Anyone know if that's true? My dr didn't' ask about my diet, or mention that I would have had to be on a gluten diet prior to it, I didn't realize this until reading later. 


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nvsmom Community Regular

The most common recommendation is 1-2 slices of bread per day (or equivalent - noodles, muffin, cereal).  2-4 slices is on the high end and is a good idea if doing a short gluten challenge (like 4-6 weeks).  Some say 1/2 a slice is enough, and that is often for the longer gluten challenges (closer to three months).  

 

Now those times are for the blood tests.  The biopsy usually requires a gluten challenge of 2-4 weeks of about 1-2 slices of bread per day.  If you are unsure if you have had enough gluten, start eating more and try to get it to 2 slices of bread per day (or a big bowl of noodles or a few cookies or muffins).

 

If your blood tests are negative, you may want to try a real gluten challenge for another 6 weeks or so and up your gluten intake and then retest.  The problem is that none of the tests are perfect.  The biopsy can miss up to 1 in 5 celiacs, and the blood tests can miss up to 1 in 4 celicas.  See page 12 of this report (sensitivity) for more data: Open Original Shared Link

 

Good luck with the tests.  :)

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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