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

Not Sure How To Proceed


ewooder

Recommended Posts

ewooder Newbie

This is my first post and I'm looking for some input. So I'll start with some background.

I'm a 28 yr old man with a long history of "sensitive stomach." I have had bouts of diarrhea a couple times a week for years, usually w/in an hour of eating. I assumed I was lactose intolerant because cereal for breakfast always made me sick - though generally yogurt/cheese don't. My Grandpa, an uncle, and a great uncle all had histories of "stomach problems," though I'm not sure of the specifics. I have a lousy immune system, I had shingles when I was 18, hospitalized with mono when I was 19 and had it reoccur at least once. My lymph nodes swell periodically since.

Lately things have gotten worse. I have been getting occasional pain in the lower right abdomen and have been having difficulty sleeping because of restless legs. The D problem has started to alternate with a C problem - which frankly seemed like a blessing at first. Also, my appetite has been tremendous, I thought it was because of working out, but now I'm not sure. Either way I haven't gained weight in ~12 years.

10 days ago I went to a prompt care family clinic after a bad bout of insomnia/rls. They took a lot of blood samples and had me go in for a CT scan. I believe everything has come back negative (except for elevated RBC), though it turns out this place is understaffed and I can't get finalized results until Friday. I plan on getting a better Doc here shortly. Anyway I'm relieved that cancer seems to be semi-ruled out, but I don't feel like I have any direction at this point.

Anyway, the doctor suggested I try a gluten free diet during my visit, which I'm doing, but if everything comes back negative what do I need to do next? I've felt somewhat better this week, but how long do I need to go gluten-free to be sure? Should I see a nutritionist or allergist or something?


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I'm glad to hear you didn't find cancer or any other severe problems. Stick to the gluten-free diet for a couple months. There is no harm in seeing a nutritionist. You don't sound particularly allergic so I don't know that you would get much out of an allergist visit.

ravenwoodglass Mentor

Hopefully one thing the doctor tested for with all the blood work was celiac, do call the office and make sure that was done. Some doctors don't realize that you will have a false negative on blood tests if you are already gluten free and will try to test after you come back telling them the diet is helping. That will make a for sure negative on the celiac panel and even on a gluten diet false negatives are all to common. After your blood panels are drawn if you are not going to have an endoscopy go ahead and follow the diet strictly for at least a couple of months. Untimately the body will know the answer.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.