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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. RMJ
      - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
    2. Colleen H
      - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

      Hello I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet. Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I...
    3. sleuth
      - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Of course my son is on a 100% gluten free diet. I wish his symptoms were not debilitating as there are right now. He cannot work, even when a miniscule of cross contamination occurs. It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc. It's literally neurological inflammation. Not to be taken lightly here. We...
    4. Scott Adams
      - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-F...
    5. Me,Sue
      - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea

      Hi all I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also]. BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,837
    • Most Online (within 30 mins)
      7,748
    Juliane
    Newest Member
    Juliane
    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

    • RMJ
      Nausea

      By RMJ · Posted

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • 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.