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Biopsy Concern

SOON-TO-BE GLUTEN-FREE

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SOON-TO-BE GLUTEN-FREE Newbie
SOON-TO-BE GLUTEN-FREE
Posted

I am confused over results of my daughter's celiac panel recently done which came back negative. She had an endoscopy done a few months ago and biopsy showed near total flattening of the villi with prominent crypt hyperplasia and degenerative changes of surface epithelium. She was also diagnosed with mild gastritis and given a script for Prilosec. To complicate matters she has a polyp in her gall bladder and is having gall bladder surgery this week. She is 21 years old and has complained of stomach pain for quite a while. Her doctor has put the possibility of celiac on back burner for now until she heals from surgery. He is pretty much going by the results from panel. I am more concerned about the biopsy. Not really familiar with medical terms, so if any of you can help shed light on her results I would really appreciate it. He suspects the flattening may have been caused by a virus. I am ready to try a gluten free diet and see how she does. I am getting tested this week and I suspect my father may have had celiac disease.

Glad to be a part of forum. Thanks.

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madwick Newbie
madwick
Posted

I had a similar situation, although in a different order than your daughter. I had my gallbladder removed in the fall and had an infection afterwards. I never felt fully recovered, so I went back to my doctor in December. He did the scope and that is when he discovered the celiac. So, I have been on restricted diets since September. Has your daughter had the blood work for celiac? I would recommend that being your next step, and don't go gluten free until after the blood work otherwise it skews the results.

Other than that, the diet for gallbladder is pretty restrictive in terms of no dairy and legumes (anything that is gas inducing).That is the really important one to follow so that the gallbladder calms down before the surgery.

Hope that helps!

Liz

Lisa Mentor
Lisa
Posted

Welcome,

This is a great place for your questions.

The Celiac Blood Panel is not 100%, so don't rule out Celiac yet. If you daughters villi were flattened, that is a very clear indication of Celiac. It's classic. Nor, have I every heard that flattened villi can be caused by a virus.

There is no further testing for Celiac, other that what your daughter has had, except for the gluten free diet. Positive dietary response is a diagnosis in itself.

I see no reason to delay the diet. She can be relieved of that pain within a few days or weeks.

This site is full of information and some great, knowledgeable people.

SOON-TO-BE GLUTEN-FREE Newbie
SOON-TO-BE GLUTEN-FREE
Posted
  • Author
Welcome,

This is a great place for your questions.

The Celiac Blood Panel is not 100%, so don't rule out Celiac yet. If you daughters villi were flattened, that is a very clear indication of Celiac. It's classic. Nor, have I every heard that flattened villi can be caused by a virus.

There is no further testing for Celiac, other that what your daughter has had, except for the gluten free diet. Positive dietary response is a diagnosis in itself.

I see no reason to delay the diet. She can be relieved of that pain within a few days or weeks.

This site is full of information and some great, knowledgeable people.

aikiducky Apprentice
aikiducky
Posted

I think you should ask for a second opinion. I'm no doctor but I've never heard of near total vili flattening from a virus. My understanding is that it's possible to have some vili damage from other causes than celiac but if the damage is that bad it's much more likely to be from celiac. The negative blood work doesn't necessarily mean that much, a lot of adults have negative blood work but positive biopsies.

Pauliina

ravenwoodglass Mentor
ravenwoodglass
Posted

I am someone who was in full blown end stage celiac----and never showed postive on a panel. I agree strongly that you need to get her on the diet as soon as possible. For one thing the stomach problems she is experiencing could be a direct result of gluten and the prilosec may well be totally unneeded once she is on the diet. The biopsy was definative of celiac, your doctor really needs to get a bit more education on celiac disease, not unusual in this country. My GI almost killed me because he relied on that darn panel for diagnosis. Please, please, please get her on the diet. It may relieve ALL of her problems, even the ones the doctor may think are totally unrelated. This is particularly true if she also has issues with depression and or anxiety. She had a positive biopsy that is really conclusive, DON'T RELY ON THAT BLOOD TEST FOR DIAGNOSIS!!!!!!!!!

SOON-TO-BE GLUTEN-FREE Newbie
SOON-TO-BE GLUTEN-FREE
Posted
  • Author

THANKS SO MUCH!!!! I wasn't in agreement with gastro doc that we should wait six months and see how she felt after surgery. Have been reading and going to every celiac site I can find. We have many gluten free products already and going to try making bread tomorrow since that is her biggest weakness. She is on medication for anxiety and I was amazed when I read about the effects of celiac on the central nervous system. We didn't want to hit her with too much right now especially with surgery this week and having a polyp in gall bladder can be serious. She's already stressed out. But she and I have made trips to Whole Foods and starting to educate ourselves. Now we need to make a total commitment to this.

After a frustrating appt with doctor she and I discussed how important it is to be an advocate for your own health. So here we are.

Thanks again for your insight.

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