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

Help

kellerg2

By kellerg2
in Coping with Celiac Disease

Recommended Posts

kellerg2 Newbie
kellerg2
Posted

I have been having stomach problems for about 3 months now. It came on suddenly and seems to get worse at times throughout the days and fine at nights. I was originally placed on Omeprozel and that seemed to help the symptoms some but they never went away. I then was referred to a GI and he performed an Endoscopy that came back inconclusive but showed "what might be the start of Celiac Sprue". Blood work was all normal. I started going gluten free about a week ago and can tell a difference without question but still have some cramps in my stomach throughout times during the day. Dr wanted me to go get a CT scan and I convinced him that i would like to continue to go gluten free for a month till our next appt and see if that works. Has anyone ever had "inconclusive" biopsy and negative blood? This has been so frustrating to me because people think its all in my head and the dr doesn't seem to have any idea whats going on. Any advice or information would be greatly appreciated. Thanks.

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

Celiac.com Sponsor (A8-M):


Kimbalou Enthusiast
Kimbalou
Posted

Just go ahead and stay gluten free. Sounds like you should, considering the biopsy results. It can take a long time to feel better. I was diagnosed in Nov and I still have stomach problems. I am very sensitive to everything I eat...spices, veggies, etc.

You are doing the best thing for your body. Welcome to this board. i'm sure you will find a lot of help here. And it's a great place to vent.

kellerg2 Newbie
kellerg2
Posted
  • Author

Just go ahead and stay gluten free. Sounds like you should, considering the biopsy results. It can take a long time to feel better. I was diagnosed in Nov and I still have stomach problems. I am very sensitive to everything I eat...spices, veggies, etc.

You are doing the best thing for your body. Welcome to this board. i'm sure you will find a lot of help here. And it's a great place to vent.

Thanks. I already feel better just knowing there's a place I can get some advice from some others going through the same thing I am. If I hear that it's probably all in my head one more time I am gonna go nuts

Asianmom Newbie
Asianmom
Posted

I hope you feel better soon!!!

I had several negative blood tests due to various reasons...and MANY inconclusive biopsies until finally I had all positive blood work and positive biopsies in the end! Mine was due to docs that didn't know what they were looking for and didn't take the biopsy in the right part of my intestine.

For me it was the timing of the tests. Seemed like they always tested me in the summer, when I ate all fresh veggies and fruit etc, and just naturally eliminated gluten from my diet...and low and behold tests came back negative. Seemed like they never tested when I was in college eating all that pizza, ramen noodles, and taco bell!

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. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it. There are...
    2. lalan45
      - lalan45 replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    3. knitty kitty
      - knitty kitty commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
      2

      Could Gluten and Alzheimer’s Be Linked? New Research Uncovers Surprising Protein Parallels (+Video)

      Thiamine deficiency has been found in the brains of people with amyloid-beta plaques. Benfotiamine, a form of Thiamine, has been shown to prevent the formation of and remove those amyloid-beta peptides and plaques! Benfotiamine improves cognitive impairment and reduces inflammation. Benfotiamine helps improve blood glucose utilization. Malabsorption...
    4. SamAlvi
      - SamAlvi posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      High TTG-IgG and Normal TTG-IgA

      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
    5. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,839
    • Most Online (within 30 mins)
      7,748
    Pepper Loo
    Newest Member
    Pepper Loo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      Am I nuts?

      By lalan45 · Posted

      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
×
×
  • 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.