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

Do You See Your Gi Regularly?


luvs2eat

Recommended Posts

luvs2eat Collaborator

I read about everyone's doctors... and wonder if I should be seeing my GI on a regular basis. To be honest, I saw him exactly twice... once to be examined and schedule my blood work and again to have my colonoscopy. He told me then that he had good news and bad news.

The good news was that he knew what was causing my unrelenting diarrhea... the bad news was that I couldn't eat gluten anymore. This was from my blood work alone.

As a (former) nurse and one who's cooked my whole life (I was 49 at the time), I was able to find good food lists... I went gluten-free that day and wasn't often accidentally "glutenized." As I saw steady improvement (I've mentioned before that it took almost a year for my bowels to get back to what I considered normal) I've not found it necessary to go back.

I've been gluten-free for several years and I'd be hardpressed to submit to a gluten challenge to have an endoscopy. Is there a reason to keep seeing the GI doc?

OR... is seeing the rheumatologist once a year okay? About a year after going gluten-free, my blood work showed a high ANA titre... so I had to have almost all my blood removed to rule out Lupus. I see the rheumatologist once a year to repeat this bloodletting and have no Lupus symptoms or elevated anything in my blood. Of course we talk about celiac disease in our discussion of autoimmune stuff.

What would you do if you were me?


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



Celiac.com Sponsor (A8-M):



Merika Contributor

I don't know what you should do. But I don't see a GI either, and I feel fine with that decision. I do see my acupuncturist regularly, and she helps with the celiac symptoms.

What would a gi do with you? Once they tell you you have celiac, that's sorta it right? And, recent research shows the blood test to be every bit as good, or better, than an endoscopy.

Merika

mytummyhurts Contributor

Wow! What's that deal with the lupus test? They think I may have lupus or something else as I have high ANA too, but I have actually had two flare ups of symptoms. They have never mentioned the blood thing though.

I don't have any current plans to go back to my GI. I've thought about having the blood test run again to see if I'm truly gluten-free, but I don't think the GI would have to do that. I wouldn't want to do the gluten challenge either. Especially because symptoms are usually worse when you go back on gluten.

cdford Contributor

I did not see my GI but about once a year until I got significantly glutened last year. After that, I have seen her regularly to follow up on some on-going problems related to the celiac disease. Hopefully I will get back to the once or twice a year follow up again one of these days. I would not worry about it unless I had specific GI symptoms that needed follow up, especially if your primary care doc is reasonably knowledgeable and accepts celiac disease as an issue.

cmom Contributor

I only see my GI every 3 years. I have the blood test to check my levels and a small bowel with follow through x-ray to make sure there are no cancer cells. However, this was BEFORE I found out that the barium I have to drink is not gluten-free! The last time I got very very sick on the way home. I will have to discuss this with him next time.

luvs2eat Collaborator

Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

He tested everything blood might tell him and examined me, asking questions about every single system to determine that my only symptom was the slightly elevated ANA.

His explanation of an autoimmune disorder was great! He told me my body was like a country (I asked him if that was some kind of FAT joke??? ha) and my immune system was my army, poised to fight off any invader (disease). But sometimes when there were no diseases to fight, the army got restless and began fighting amongst themselves... and this internal fighting is an autoimmune disorder.

Anyhow, I see him now once a year, he asks me 1,000 questions, I say "no" to every one (cross fingers it's always that way!) and I'm on my way!

Thanks for the input on visiting your GI everyone!

bremac Apprentice

I haven't been back to mine in almost 2 years. I was actually just wondering today if I should go see him again before I start med school just to make sure my antibodies are low and everything. I had a physical with my primary doc a month ago though, and I'm not anemic (which is what happens when I get glutened a lot). Plus, I donate blood every 4 months or so and they check for anemia too, hehe. :-)


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



Celiac.com Sponsor (A8-M):



mytummyhurts Contributor
Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

Okay, I get it now. :lol:

I was going to say, that sounds like a weird test!

I know what you mean though, they do have to take a lot of viles for all the tests.

I've heard that some people even just in the general populations have high ANA and half of them never develop any type of disease related to those. Unfortunately, it is likely I have one as now I have had two flare-ups and it is not fun! Obviously! They were six months apart though and if it they stay that far apart I could probably deal with it. I'm just scared of the organ damage of the more serious lupus. I still don't really understand all of the different autoimmune tissue/joint disorders.

celiac3270 Collaborator

In the beginning (right at diagnosis) it's usually recommended to go back in 3 months, then wait 6 months, then if the bloodwork is normal, a year, if not, every three months until it is.

You should visit your GI annually and have bloodwork done to make sure you're 100% gluten-free.

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. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    2. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    3. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748

    Dorfor
    Newest Member
    Dorfor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
×
×
  • 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.