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Testing For Celiac

samanthaw

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samanthaw Newbie
samanthaw
Posted

Hello All,

Like many of you, I am struggling to determine if I have celiac disease. I recently saw my general practitioner for a "well woman" exam -- I had complaints of fatigue, depression -- just not feeling like myself. She ran blood tests including ferritin levels and determined that I was anemic. I then underwent an endoscopy and colonoscopy to make sure I wasn't bleeding internally (I'm 42 years old). The colonoscopy was clear but the endoscopy revealed "mild villous atrophy with intraepithelial lymphocytes consistent with celiac disease". The GI then ran antibody blood tests, which he said were negative for celiac disease. I have not heard back on the results of the gene testing. He now wants me to wait about 3 months and do another endoscopy to see if the results are the same. He does not seem to want to diagnose celiac disease and downplays the illness thinking it is the "popular" disease of the day.

My question to all of you is had anyone had similiar test results and if so, did your doctor diagnose you with celiac disease? Can a person have the results that I had from the small bowel biopsy and not have celiac disease?

Any help provided will be greatly appreciated.

Thanks, Sabrina

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Lisa Mentor
Lisa
Posted
Hello All,

Like many of you, I am struggling to determine if I have celiac disease. I recently saw my general practitioner for a "well woman" exam -- I had complaints of fatigue, depression -- just not feeling like myself. She ran blood tests including ferritin levels and determined that I was anemic. I then underwent an endoscopy and colonoscopy to make sure I wasn't bleeding internally (I'm 42 years old). The colonoscopy was clear but the endoscopy revealed "mild villous atrophy with intraepithelial lymphocytes consistent with celiac disease". The GI then ran antibody blood tests, which he said were negative for celiac disease. I have not heard back on the results of the gene testing. He now wants me to wait about 3 months and do another endoscopy to see if the results are the same. He does not seem to want to diagnose celiac disease and downplays the illness thinking it is the "popular" disease of the day.

My question to all of you is had anyone had similar test results and if so, did your doctor diagnose you with celiac disease? Can a person have the results that I had from the small bowel biopsy and not have celiac disease?

Any help provided will be greatly appreciated.

Thanks, Sabrina

Please get a new doctor, one that is knowledgeable and one that doesn't downplay the facts.

Your villous atrophy IS consistent with Celiac Disease and IS considered a diagnosis.

Testing for Celiac can render false negatives but never false positives. Coupled with a positive dietary response, it's a pretty sure bet that you do have Celiac.

Welcome to the Club!

lizard00 Enthusiast
lizard00
Posted

As Momma Goose said, please get another opinion.

Many people can test negative with the blood testing, but the biopsy is considered the gold standard for diagnosis, especially when the blood tests are negative.

Tallforagirl Rookie
Tallforagirl
Posted
Your villous atrophy IS consistent with Celiac Disease and IS considered a diagnosis.

Testing for Celiac can render false negatives but never false positives. Coupled with a positive dietary response, it's a pretty sure bet that you do have Celiac.

There can be other causes for villous atrophy, so do make sure your doctor rules out any other causes before diagnosing celiac disease. Since you don't have positive blood panel results it may not pay to jump to conclusions before checking out all possibilities.

Other causes of villous atrophy include:

"Cow

ravenwoodglass Mentor
ravenwoodglass
Posted

Did this doctor tell you to go on the diet strictly and then he would rebiopsy or did he tell you to keep eating gluten? Some doctors are very reluctant to diagnose celiac and will tell us to keep on gluten until the villi are totally destroyed.

IMHO you should do the former. Go off of gluten strictly and then if symptoms have not resolved start looking for the 'other possible reasons' for the villi atrophy. Most of the other causes are things that can be related to celiac or that can be found in tandum with it.

In addition get your hands on the actual results from the blood tests along with the lab's ranges. There are doctors that will consider a low positive a negative and tell the patients the test was negative if the results were only a few points into the positive range. As for the gene tests do not consider it is a definte 'you don't have it' if you do not have DQ2 or 8. Those are the only celiac related genes that are tested for in the US. In other countries there are 7 others that are also celiac related but doctors here do not look for them.

samanthaw Newbie
samanthaw
Posted
  • Author
Did this doctor tell you to go on the diet strictly and then he would rebiopsy or did he tell you to keep eating gluten? Some doctors are very reluctant to diagnose celiac and will tell us to keep on gluten until the villi are totally destroyed.

IMHO you should do the former. Go off of gluten strictly and then if symptoms have not resolved start looking for the 'other possible reasons' for the villi atrophy. Most of the other causes are things that can be related to celiac or that can be found in tandum with it.

In addition get your hands on the actual results from the blood tests along with the lab's ranges. There are doctors that will consider a low positive a negative and tell the patients the test was negative if the results were only a few points into the positive range. As for the gene tests do not consider it is a definte 'you don't have it' if you do not have DQ2 or 8. Those are the only celiac related genes that are tested for in the US. In other countries there are 7 others that are also celiac related but doctors here do not look for them.

samanthaw Newbie
samanthaw
Posted
  • Author
Please get a new doctor, one that is knowledgeable and one that doesn't downplay the facts.

Your villous atrophy IS consistent with Celiac Disease and IS considered a diagnosis.

Testing for Celiac can render false negatives but never false positives. Coupled with a positive dietary response, it's a pretty sure bet that you do have Celiac.

Welcome to the Club!

Thanks Lisa and I do plan to get a new doctors that hopefully specializes in patients with Celiad Disease.

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samanthaw Newbie
samanthaw
Posted
  • Author
There can be other causes for villous atrophy, so do make sure your doctor rules out any other causes before diagnosing celiac disease. Since you don't have positive blood panel results it may not pay to jump to conclusions before checking out all possibilities.

Other causes of villous atrophy include:

"Cow

samanthaw Newbie
samanthaw
Posted
  • Author
Did this doctor tell you to go on the diet strictly and then he would rebiopsy or did he tell you to keep eating gluten? Some doctors are very reluctant to diagnose celiac and will tell us to keep on gluten until the villi are totally destroyed.

IMHO you should do the former. Go off of gluten strictly and then if symptoms have not resolved start looking for the 'other possible reasons' for the villi atrophy. Most of the other causes are things that can be related to celiac or that can be found in tandum with it.

In addition get your hands on the actual results from the blood tests along with the lab's ranges. There are doctors that will consider a low positive a negative and tell the patients the test was negative if the results were only a few points into the positive range. As for the gene tests do not consider it is a definte 'you don't have it' if you do not have DQ2 or 8. Those are the only celiac related genes that are tested for in the US. In other countries there are 7 others that are also celiac related but doctors here do not look for them.

He told me to continue eating gluten I suppose with the thought that he would see if the problem cleared without a gluten-free diet and then he would assume I did not have celiac disease. However, I have read that symptoms of Celiac Disease can wax and wane. What I failed to ask him is what would he then recommend if the biopsy showed abnormal results. Would I then go on a gluten-free diet and undergo a third endoscopy????

I have requested the lab reports and hope to get them soon. I may ask for your IMHO again.

Thanks so much!!

happygirl Collaborator
happygirl
Posted

You may want to post on the board asking for an experienced doctor in your area, or contact a local Celiac support group and ask who their members use.

You do not have to have positive bloodwork and biopsy for diagnosis.

It'll be interesting to see which bloodwork he ran.

Also, there is some research that indicates that "lesser" damage (mild) isn't often picked up on blood tests. The blood tests are generally more accurate with "more" damage.

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