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georgie

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georgie Enthusiast
georgie
Posted

I met my friend today. She said she does NOT have Celiac Disease. Her blood tests were positive, but her colonoscopy was negative - and her Specialist told her she does NOT have celiac disease.

I didn't think this was right so told her to read this site. Any words of wisdom anyone ? She has lots of symptoms of bloating and malnourishment ( super skinny)

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darlindeb25 Collaborator
darlindeb25
Posted

I think her specialist may have taken one sample, or maybe doesn't even know what he/she is looking for. If she had a positive blood test, then she definitely should go gluten free. A gluten free diet can't hurt her, yet it could make her feel so much better. A positive blood test would be all I needed to go gluten-free. It's sad, yet many celiac's have false negatives.

Lisa Mentor
Lisa
Posted

If her blood test was positive, she has celiac.

Also, a colonoscopy is a scope in the large intestines, and an endoscopy will test the small intestines where celiac can be diagnosed with flattening of the villi and biopsy's can be taken.

Your friend has celiac.

chocolatelover Contributor
chocolatelover
Posted

It doesn't make any sense to me why she was told, with positive bloodwork (do you know what her numbers are?), that she doesn't have celiac. And why would they do a colonoscopy and not an endoscopy? I think she needs to realize that she has the disease, and then she needs to get a new doctor!

Definitely encourage her to come here and ask questions and get support--it sounds like she's going to need it.

Nantzie Collaborator
Nantzie
Posted

Yep. She has celiac disease.

I can't remember which prominent celiac doctor said this, but he said that a positive celiac blood test is like having a positive pregnancy test. You can't be a little bit pregnant, and you can't be a little bit celiac.

I hope she decides to go on the gluten-free diet, AND get a new doctor.

Nancy

super-sally888 Contributor
super-sally888
Posted

Hi,

If your friend had a colonoscopy, that would tell nothing, because the colon is not where the characteristic damage from celiac occurs.

It occurs in the small intestine, not the large intestine, which is what is checked with the colonoscopy. Even if she got mixed up and meant endoscopy not colonoscopy, it is possible to have negative results becuase the dr. took the sample from the wrong place / a place that wasn't damaged. The damage can be patchy not all over.

If her blood tests were positive she definitely has celiac. She needs to be on the diet to start getting well. She needs a new dr.

Lucky her to have such a considerate friend.

Sally

georgie Enthusiast
georgie
Posted
  • Author

Thanks for all your help. I am a bit confused myself as I am sure she said colonoscopy but perhaps I was wrong. But she was doubting me as she saw a top specialist about this. I will urge her to change Drs.

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nora-n Rookie
nora-n
Posted

Damage in the small intestine is often patchy, and easily missed. I read posting the other day on another forum where the endoscopy was negative, but she got a capsule endoscopy with camera and the pictures showed partially villous atrophy with typical changes , and the next biopsies showed celiac, probably because they happened to take samples from the right places.

nora

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