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? About # Of Biopsies....confused....

carecare

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carecare Enthusiast
carecare
Posted

My son met with the Ped. GI doctor that specializes in celiac disease at Children's Hospital in Milwaukee last week. I asked the nurse how many biopsies would be taken during his endoscopy in December and she said 8...then she said...2 in the esophagus, 4 in the stomach and 2 in the lower intestines. Shouldn't it be more in the intestines...and why so many in the stomach. My son wasn't even having stomach issues that brought him in...he was having muscle pain and mouth sores...and constipation (which came be full force and worse once gluten was added back into his diet last week). I go back on Friday to an appointment with him again...so we can set up an endoscopy for my 18 yr old daughter. She started college and is having a heck of a time with all the gluten foods in the cafeteria and is ready to be tested. Should I inquire about them doing more than just 2 biopsies of the small intestine? Why would they do so many in the stomach and the esophagus when the complaints aren't there. Should I insist they do more than 2?

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Lisa Mentor
Lisa
Posted

My son met with the Ped. GI doctor that specializes in celiac disease at Children's Hospital in Milwaukee last week. I asked the nurse how many biopsies would be taken during his endoscopy in December and she said 8...then she said...2 in the esophagus, 4 in the stomach and 2 in the lower intestines. Shouldn't it be more in the intestines...and why so many in the stomach. My son wasn't even having stomach issues that brought him in...he was having muscle pain and mouth sores...and constipation (which came be full force and worse once gluten was added back into his diet last week). I go back on Friday to an appointment with him again...so we can set up an endoscopy for my 18 yr old daughter. She started college and is having a heck of a time with all the gluten foods in the cafeteria and is ready to be tested. Should I inquire about them doing more than just 2 biopsies of the small intestine? Why would they do so many in the stomach and the esophagus when the complaints aren't there. Should I insist they do more than 2?

Yes, I should think so. But the other samples will be considered for other issues, or to rule them out.

soltd Newbie
soltd
Posted

I have all the symptoms of celiac and was diagnosed with IBS 8 years ago. Symptoms have gotten progressively worse and doctor ran blood tests for celiac. Two out of the three tests came back positive for celiac so a biopsy was recommended. Biopsy was done and doctor said everything looked ok. Still waiting for biopsy results. My question is can everything look ok (meaning no visible results of atrophy) and still have a biopsy that comes back positive for celiac?

sa1937 Community Regular
sa1937
Posted

I have all the symptoms of celiac and was diagnosed with IBS 8 years ago. Symptoms have gotten progressively worse and doctor ran blood tests for celiac. Two out of the three tests came back positive for celiac so a biopsy was recommended. Biopsy was done and doctor said everything looked ok. Still waiting for biopsy results. My question is can everything look ok (meaning no visible results of atrophy) and still have a biopsy that comes back positive for celiac?

I would say you have celiac if the blood tests were positive. It would be highly unusual (unless damage was really severe) to visually see villous atrophy with the naked eye. That's why a pathologist will examine the biopsies under a microscope. Make sure you pick up copies of the blood tests and pathology report so you can keep them on file.

Since you have already had biopsies done, you can start a strict gluten-free diet without waiting for your follow-up appointment. And welcome to the forum!

Roda Rising Star
Roda
Posted

I would insist that at least 8 samples are taken just in the small bowel in different spots along with the other biopsies in the esophagus/stomach too.

chrissyinnj Apprentice
chrissyinnj
Posted

According to recommendations by the AGA it is supposed to be 4-6 in the decending duodenum.

carecare Enthusiast
carecare
Posted
  • Author

Thanks everyone. I will ask him about this and request more from the small intestines for sure. I bring my 18 yr old daughter in on Friday so she can schedule that endoscopy for winter break. I hope he is receptive to my request :blink:

I also hope he has some suggestion about whether we should continue on eating gluten. 12 yr old is suffering(muscle pain, canker sores and constipation + gas pain)...10 yr old not as much but daily stomach pain and exhaustion. Both are sleeping 2 hours longer than they normally do each morning...and this is a week back on gluten. We have to go on like this until Dec. 16th if we want any diagnosis. Who knows...we might just decide it's not worth it and end this gluten poisoning soon.

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    • trents
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      By trents · Posted

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      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
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      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
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      Oats gluten free?

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      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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