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.

pufffee

Blood Pos/neg, Do Endo Or Not Do Endo Advice

Recommended Posts

Hi

Lots of people here have helped me so I figured I would share my story. Please see my time line of events to see my struggle found on my profile.

Lots of people ask on this site, My blood was negative so I am fine right? or it was positive and I don't want to do endoscopy because I feel ok. DO NOT BELIEVE YOUR RESULTS THE FIRST TIME. TRY TRY AGAIN, I went through hell and had Celiac all along. My Gastro dr and Primary Care Dr almost had me diagnosed with OC and went through MEdication after medication for all the wrong reasons, All because blood work was negative and the one sample they took of biopsy seemed normal(should take min of 5 biopsy's). I finally got fed up and went to Lahey Clinic. Within one week I had a panel of blood work done above and beyond what was tested before. I had results next day, ALL Positive! Then scheduled Endo for very next week. I had extreme inflamation and most of the villi were folded down and all samples were positive.

Basically two points, Do not let blood work be your determining factor. And Do yourself a favor and see a specialist right away. you will only be hurting yourself dealing with someone who only knows a little.

Hope this helps and sorry to ramble. My experience was horrible and now have answers.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I went through the same thing as far as negative blood work goes. Over and over again told I didn't have it even though I was so obviously celiac but since the blood tests were negative no one thought to do a scope and look. Hence my constant repeating to try the diet after all testing is done.

I am glad you finally got answers and am sorry you to had to suffer so long first.


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

Negative bloodwork here as well but doc was willing to send me for endoscope anyway because of anecdotal evidence being so strong. Biopsy was very conclusive for positive diagnosis. Good thing you kept digging.

Share this post


Link to post
Share on other sites