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

Follow-up Blood Work Results

heatherjane

By heatherjane
in Coping with Celiac Disease

Recommended Posts

heatherjane Contributor
heatherjane
Posted

I was diagnosed with celiac in January and have been gluten-free ever since. (My original numbers were all way over 100, but I don't know specifics.) Last week, I had my antibodies retested. My doctor himself called me this afternoon and left a lenghthy voicemail about my progress. My numbers are down 75%, and I am elated to hear this news because of my high numbers at time of diagnosis, and because I've had some lingering bowel issues that have made me wonder if I was getting better at all.

Because I have "only" improved 75%, my doctor also insinuated that I have not fully grasped the diet and needed to work at it a little harder. He also said, though, that it's a possibility that I could have lymphocytic colitis as well - which could account for the frequent (unproductive) BMs with their varying consistencies (but no diarrhea). If that's the case, then he's going to put me on some kind of medication. (He's calling me back on Monday so we can discuss all of this further.)

I honestly can't imagine where I'm getting any gluten. I rarely, RARELY eat out, and the few processed foods I eat are ones that have been confirmed gluten free. (I'm going to try to eliminate them altogether and see if that helps.) Beauty products, soap, shampoo, medications, vitamins...all gluten free. I live alone, so there's no risk of a contaminated kitchen. Kissing is definitely not an issue. It's possible, I suppose, that I could be getting it at work somehow through handsoap, or surfaces in the breakroom (which I enter only when necessary). I'm paranoid of any stray crumb when I can't identify the source.

I'm inclined to think that my improvement is just slower than normal. I'm scheduled for a repeat EGD/colonoscopy on Oct 7th, so we'll know how the villi are doing at that time. I was just wondering what you guys think about it, since I know a lot of people in this forum seem to have a wealth of knowledge. I would appreciate your thoughts. :)

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

Celiac.com Sponsor (A8-M):


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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Doctors
      9

      Second chance

      @Jmartes71, Have you tried a naturopathic or holistic doctor? Some posters in the past have commented theirs were more helpful than mainstream doctors.
    2. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      @HectorConvector, Have you tried taking 500 mg of the Thiamine Mononitrate that you have left? Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand. Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency. No harm in trying it. Neuroplastic...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Doctors
      9

      Second chance

      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,671
    • Most Online (within 30 mins)
      7,748
    brad Mccarroll
    Newest Member
    brad Mccarroll
    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

    • knitty kitty
      Second chance

      By knitty kitty · Posted

      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 
×
×
  • 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.