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Biopsy Negative...

DoogiePCT

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DoogiePCT Apprentice
DoogiePCT
Posted

Hi Everyone,

I'm a 22 year old male with a history of thyroid cancer. So for the past few years, I've been having fatigue issues, along with gastrointestinal symptoms....I've also had a skin rash that looks to me like herpetiforms, and I have a diagnosed thyroid disorder that is well under control. Recently, I've become aware of Celiac disease, and called my doctor, and he informed that when I had an endoscopy a few months ago, they took a piece of my intestine to biopsy for celiac sprue, which came back negative. I asked him to fax it to me, and sure enough, they did and its negative.

My question is, could the biopsy be wrong? Or could I not have been consuming enough gluten in the days before for it to show?

Thanks so much.

Doug

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happygirl Collaborator
happygirl
Posted

Welcome to the board!

How many biopsy samples did the pathology report describe?

Gfresh404 Enthusiast
Gfresh404
Posted
Hi Everyone,

I'm a 22 year old male with a history of thyroid cancer. So for the past few years, I've been having fatigue issues, along with gastrointestinal symptoms....I've also had a skin rash that looks to me like herpetiforms, and I have a diagnosed thyroid disorder that is well under control. Recently, I've become aware of Celiac disease, and called my doctor, and he informed that when I had an endoscopy a few months ago, they took a piece of my intestine to biopsy for celiac sprue, which came back negative. I asked him to fax it to me, and sure enough, they did and its negative.

My question is, could the biopsy be wrong? Or could I not have been consuming enough gluten in the days before for it to show?

Thanks so much.

Doug

You would have had to have been gluten-free for at least four weeks for it to skew the biopsy in any way. A couple days is not going to make a difference.

I am a bit skeptical as whether or not a biopsy can miss damage. I'm sure there are people out there that will disagree with me but if enough samples are taken it is rare for a biopsy to miss damage. Keep in mind though, a biopsy can only diagnose Celiac disease. Currently there is no diagnostic criteria for "Non-Celiac Gluten Sensitivity." NCGS is however gaining more and more attention and I would not be surprised if it becomes an official diagnosis within the next few years.

It is believed that NCGS affects significantly more people than Celiac does. It has also been noted that if people with NCGS continue to consume gluten for a long enough time period, they are very likely to develop Celiac disease. Many people, myself included, believe that Celiac Disease and NCGS are essentially the same thing. In Celiac however, the first organ that is attacked just happens to be the small intestine.

I myself would be considered a non-celiac. I had negative blood work and a negative biopsy, but still responded favorably to a gluten-free diet. The best way to know for sure if gluten is effecting you in any way is to give a gluten-free diet a try. See if you feel any better. But give it some time, I noticed an improvement within a day or two while some people don't start feeling better for months.

jerseyangel Proficient
jerseyangel
Posted

It's my understanding (and the belief of my former gastroenterologist) that the patchy damage from Celiac can be missed. The small intestine is around 22 feet long, and even with the doctor taking multiple samples (they should take 6-10) it can still be missed. There is also the issue of the skill of the person reading the test--milder damage can be overlooked this way.

If your doctor indeed only took one sample, it's quite possible any damage that might be there was missed.

A positive biopsy can rule Celiac in, but a "negative" can't altogether rule it out. If you've had the biopsy and the bloodwork, I would suggest giving the diet a try for a month and see if you feel better. :)

DoogiePCT Apprentice
DoogiePCT
Posted
  • Author

Hey all--

the report from the biopsy report says, quote: "Received in formalin, labeled "biopsy duodenum" are three (3) irregular fragments of soft, tan, mucosal tissue averaging 0.3 cm, in maximum dimension which are submitted in toto. 1/3 bm/ab. Small Bowel- duodenum-BIOPSY Negative small intestinal mucosa."

That puts me at ease that I haven't been murdering my own body with what I eat, since my guess is I don't have it. I will have the blood test and then let it go, the anxiety will be too much for me. LOL.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hey all--

the report from the biopsy report says, quote: "Received in formalin, labeled "biopsy duodenum" are three (3) irregular fragments of soft, tan, mucosal tissue averaging 0.3 cm, in maximum dimension which are submitted in toto. 1/3 bm/ab. Small Bowel- duodenum-BIOPSY Negative small intestinal mucosa."

That puts me at ease that I haven't been murdering my own body with what I eat, since my guess is I don't have it. I will have the blood test and then let it go, the anxiety will be too much for me. LOL.

Since all that was biopsied was the duodenum you are not in the clear. I would suggest that you give the diet a good strict try for a month or so to see if it helps. You also should see a dermatologist and get the area beside the rash biopsied looking specifically for DH. If you have DH you have celiac.

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