Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

jenny2

Testing Done.

Recommended Posts

can someone tell me if my blood tests come back negative for Celiac disease should i ask the doc for a upper endoscopy done? i had negative blood tests for celiac 8 years ago but postive upper endoscopy with flat villi. the docs thought that i didnt have celiac so i have continued to eat gluten for 8 years. flashforward to today, i am having alot of trouble with losting weight, and digestive issues. i just need so advice, thanks

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


If you had a positive biopsy there is a good chance you have celiac. Have you had the blood tests redone or did you get a copy of them? Some doctors will call a low positive negative. You might want to get bloodwork redone and then give the diet a good strict try no matter what the results. Or you could just go gluten free. Since both blood and biopsy have high rates of false negatives but not false positives the positive biopsy was significant in spite of the negative blood tests. Many doctors would have diagnosed with the positive biopsy since that has been considered the 'gold standard' for diagnosis.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case.

The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (link). Maybe that's what the doctor thinks happened? Or maybe your positive was only for minor changes that can be explained by several different conditions?

I'd be asking your doctor to explain why he thought you were negative despite the biopsy. There should probably be some answer other than "Oh... Well, the blood work wasn't positive."

Share this post


Link to post
Share on other sites

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

Share this post


Link to post
Share on other sites

Yes hon, go gluten free you've got nothing to loose except maybe your debilitating symptoms.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

Share this post


Link to post
Share on other sites

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

Wow...that's a huge weight loss, hun! :o When you say you were retested on friday, do you mean blood tests? Hopefully you will get some answers, but even if they are negative, you should still give the gluten free diet a good try (2-3 months). Sometimes gluten intolerance doesn't show up in your blood work, but it still wreaks havoc on your body. :(

Definately go gluten free, no matter what the test says.


Celiac DX 9/2011 ~ Gluten free ever since

Hashimoto's Thyroiditis 10/2011

Premature Ovarian Failure 11/2010

Rheumatoid Arthritis 10/2011

Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

Share this post


Link to post
Share on other sites

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

Share this post


Link to post
Share on other sites

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

If you are going to have an endo do keep eating gluten until that is done. Even on gluten there is still a chance of false negatives with testing so when all testing is done give the diet a good strict try.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites