Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

pufffee

Recommended Posts

pufffee Apprentice
pufffee
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Hi,

Thank you for posting. Now you know why so many seem to be "self" diagnosed, with negative blood tests. :rolleyes:

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

chasbari Apprentice
chasbari
Posted

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.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,542
    • Most Online (within 30 mins)
      7,748
    Jacqueline Dee
    Newest Member
    Jacqueline Dee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.