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

Tested Neg But Still Wondering


wondering

Recommended Posts

wondering Newbie

...how long do you have to be eating gluten-y foods in order to have an accurate blood test? I took gluten out of my diet and my symptoms (chronic fatigue, bone and back pain, bloating, gas, diarrhea AND constipation at times, mental fuzzines) have gotten better. I fell off the wagon, so to speak, and went on a gluten binge and all my symptoms returned even worse. It's now been almost 3 weeks without gluten this time around, I'm feeling a bit better but I just got tested and it came back in the normal range. How accurate are the blood tests and could the fact that I haven't been having gluten make a difference? I'm reluctant to go back to gluten just to get another blood test, but I really think that gluten is the cause. Any expertise or input would be appreciated!


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



Celiac.com Sponsor (A8-M):



Dwight Senne Rookie

Yes, I believe that could have given you a negative result. Unfortunately, both the blood test and the biopsy require you to be ingesting gluten for an appreciable time prior to the test in order for them to be accurate.

I would recommend that if you are not already seeing a gastroenterologist, that you find one experienced in Celiac Disease and explain your symptoms and the fact that you got better when going gluten free. You can then ask how he/she would like you to proceed to get accurate diagnostic tests. Presumably, you would have to go back to ingesting gluten for a certain amount of time prior to testing.

Guest jhmom

THe blood test are not fool proof and for some people it takes time for the disease to register in the blood or damage the villi in the small intestines (per my doctor). So regardless if you start back on gluten again and have blood-work or a biopsy it could ALL come back negative and you could still have celiac disease.

In my opinion there are 4 ways to be disgnosed:

1. through blood-work

2. through a biopsy

3.an improvement on a gluten-free diet

4. stool panel test from Open Original Shared Link, these test are more sensitive than blood and you do not have to be on gluten for them to be accurate. It is also noninvasive and simple.

I do hope you find some answers soon! Take care :)

Archived

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

  • 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. - knitty kitty replied to Ginger38's topic in Related Issues & Disorders
      23

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      33

      Severe severe mouth pain

    3. - Bogger replied to Bogger's topic in Related Issues & Disorders
      2

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

    4. - trents replied to Charlie1946's topic in Related Issues & Disorders
      33

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,083
    • Most Online (within 30 mins)
      7,748

    AASpahic
    Newest Member
    AASpahic
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Ginger38,  Are you taking a B Complex vitamin?  Vitamin D?  Thiamine in the form TTFD or Benfotiamine? I think increasing my B Complex vitamins and taking additional Thiamine and Vitamin C and zinc helps along with the Lysine.  
    • knitty kitty
      There's simple dietary changes that can be done to improve Barrett's esophagus.  There are vitamins that improve Barrett's esophagus --- most of the B vitamins! Reducing sugary foods and drinks will help.  A diet high in simple carbohydrates can deplete Thiamine and other B vitamins needed to process them into energy. Eating green leafy vegetables helps.  Green leafy vegetables are high in Folate and Riboflavin.       Dietary sugar and Barrett’s esophagus https://pmc.ncbi.nlm.nih.gov/articles/PMC5725502/#:~:text=The major finding of the,and sugar consumption [13].     Dietary intake of vegetables, folate, and antioxidants and the risk of Barrett's esophagus https://pubmed.ncbi.nlm.nih.gov/23420329/    Intakes of dietary folate and other B vitamins are associated with risks of esophageal adenocarcinoma, Barrett's esophagus, and reflux esophagitis https://pubmed.ncbi.nlm.nih.gov/24132576/    Associations between dietary folate intake and risks of esophageal, gastric and pancreatic cancers: an overall and dose-response meta-analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC5689728/     Dietary vitamin B intake and the risk of esophageal cancer: a meta-analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC6225909/#:~:text=A statistically significant%2C inverse association,an increased risk of EC.    Intake of Dietary One-Carbon Metabolism-Related B Vitamins and the Risk of Esophageal Cancer: A Dose-Response Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC6073467/    Dietary riboflavin deficiency induces ariboflavinosis and esophageal epithelial atrophy in association with modification of gut microbiota in rats https://pubmed.ncbi.nlm.nih.gov/32458157/    Association of Vitamin D and Parathyroid Hormone With Barrett's Esophagus (parathyroid needs Pyridoxine B6) https://pubmed.ncbi.nlm.nih.gov/30180151/   "let food be your medicine, let medicine be your food. "
    • Bogger
      Thanks for your reply I’m a nearly 69yr old female. My only medications are Fosamax and Lamotrigine for seizures. Thank you for that drugs.com link! There are soooo many common side effects for Reclast and almost nothing for Fosamax. Since it’s working well and I haven’t had any side effects from Fosamax (stomach bleeding, pain or upset) my doctor recommends it first over Reclast. Reclast is introduced into a vein thus bypassing the stomach which avoids all those stomach issues. But, once it’s in me, it’s there for a year or so. Any complications can’t be undone. With Reclast, I’m concerned about not being able to treat dental issues, several weeks of bone pain and the chance, although rare, of kidney damage. Plus all those other dozens of common side effects. It’s a very effective drug but looks pretty complicated to deal with. Hopefully I’m not just being a big chicken. In 2018 I fell and broke my ankle in two places. It took three screws to put it back together which is normal for that surgery. There was no mention of any difficulty or signs of bone loss. Thanks to my dog, I fell about a month ago onto a concrete floor with thin carpet. I landed on my left hip, then my spine, one vertebrae at a time, then clunked my head on the door frame. Twisted my wrist too. It was all in slow motion waiting to feel a crack that didn’t happen. Went to the ER tho. Amazingly, I didn’t even see any bruises. Thanks again for that link. I need to read through it some more. My doctor’s appt is next week when I’ll make the big decision.   
    • trents
      But for someone with Barrett's like @Charlie1946, long term PPI therapy might be necessary. 
    • Caligirl57
×
×
  • 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.