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

My Update


whattodo

Recommended Posts

whattodo Enthusiast

Just an update,

I have just come back from the doctor and was very annoyed that the hospital are not doing as requested. I have been in for blood test for celiac disease and a biopsy in my stomach for helicobacter pylori. Everytime i go in the just run tests on other stuff even though i make sure before hand what they are testing for. Anyway, they now know that my duodenum has no folds. The doctor today says that it might still be celiac disease or even yet helicobacter pylori. He has now also thrown another thing into the pot, he says it could be gallstones that are making my gallbadder excreting too much bile. This could also result in the duodenum folds reducing. I am having a screen done for this.

Has anyone else heard of this before. I am really hoping that it is not celiac disease, but not sure i want to have my gallbladder removed. Even better id prefer helicobacter pylori.

Anyway, my doctor is personally pushing the hospital and hopefully i will be fixed soon.

Not being to premature but would like to thank everyone for their past help.

Thanks

Jay


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



Celiac.com Sponsor (A8-M):



Guest Chrisbee
Just an update,

I have just come back from the doctor and was very annoyed that the hospital are not doing as requested. I have been in for blood test for celiac disease and a biopsy in my stomach for helicobacter pylori. Everytime i go in the just run tests on other stuff even though i make sure before hand what they are testing for. Anyway, they now know that my duodenum has no folds. The doctor today says that it might still be celiac disease or even yet helicobacter pylori. He has now also thrown another thing into the pot, he says it could be gallstones that are making my gallbadder excreting too much bile. This could also result in the duodenum folds reducing. I am having a screen done for this.

Has anyone else heard of this before. I am really hoping that it is not celiac disease, but not sure i want to have my gallbladder removed. Even better id prefer helicobacter pylori.

Anyway, my doctor is personally pushing the hospital and hopefully i will be fixed soon.

Not being to premature but would like to thank everyone for their past help.

Thanks

Jay

Hi Jay,

I don't know about the other two issues, but celiac can definitely cause the lack of folds. Here is a link to Columbia University's Celiac program for more information.

Open Original Shared Link

I hope they figure out which problem it actually is so you can feel better soon.

Christi

debmidge Rising Star

You don't want the pylori bacteria either, the antibiotics for that are strong. I don't know what would be the best choice however...it just stinks when you don't feel well.

angel-jd1 Community Regular

Jay-

So the doctor was mad at the hospital? That is good....right?

Have you been doing the gluten-free thing? How are you feeling with that?

-jessica :rolleyes:

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

    2. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    3. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    4. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      47

      Supplements for those Diagnosed with Celiac Disease

    5. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      yes i do take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
×
×
  • 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.