Jump to content

  • 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):

So here's my story...any help greatly appreciated

Laura.D

By Laura.D
in Related Issues & Disorders

Recommended Posts

cyclinglady Grand Master
cyclinglady
Posted
5 minutes ago, ironictruth said:

"I was fine and then I wasn't".

Yup! 

I agree with cycling lady. Go get it checked. It may not go up after a few glutenings but have the old glidian tests done too. I never did. I  guess they are not reliable for diagnosis but good at measuring adherence to the diet. I read a bunch of articles on vagus nerve and celiac disease. I never had issues like this until I started my gluten challenge either. I was convinced they could not be related I'm still not a hundred percent sure. But it is the only thing that makes sense at this point. Keep following up with doctors if anything gets worse so that you don't automatically assume it's gluten. But just know that it can cause some wacky stuff, my brother is a confirmed Celiac and he had all sorts of issues. most of the doc's do not recognize this they just think that you should have abdominal issues only.

Researchers are not recommending the old Gliadin tests anymore because they have been replaced by the DGP tests.  The OP should request those.   The DGP tests are better for determining dietary compliance and can be just as good at making an initial celiac disease diagnosis.  

Open Original Shared Link

Open Original Shared Link

I am not trying to be a know-it-all, but I'm posting this to help future celiac members! :)

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

Celiac.com Sponsor (A8-M):


Laura.D Newbie
Laura.D
Posted
  • Author

Oh you're not being a know-it-all at all! I really appreciate you sharing your expertise! :)

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Laura.D said:

I actually had the celiac panel run last July and then also the colonoscopy/endoscopy, and was told it all came back negative, and since the doctors are all in the same health system around here, they don't seem to think they should run them again. Last week I did drive further away to a new health system though, so maybe they would redo the tests. 

So what?  That means you were gluten-free compliant and your celiac disease was not active (remission) last July.  Anything could have happened since then (and it obviously has).  Please find a celiac-savvy GI and keep every single record and document like crazy.  

Obviously your GI doctor is not following the standard level of care for celiac disease as recommended by the American College of Gastroentrology Association (same in Great Britain):

Open Original Shared Link

Print this off and take it to your doctor (if you choose to go back).  Be sure to send him a separate letter or email asking him why when you are so ill, does he refuse to order another celiac panel to determine is your celiac disease is active again.   Also, please take someone with you on your doctor visits.  It helps when you have someone taking "notes".  You can be too sick to ask all the right questions.  

Gemini Experienced
Gemini
Posted
10 minutes ago, cyclinglady said:

Researchers are not recommending the old Gliadin tests anymore because they have been replaced by the DGP tests.  The OP should request those.   The DGP tests are better for determining dietary compliance and can be just as good at making an initial celiac disease diagnosis.  

Open Original Shared Link

Open Original Shared Link

I am not trying to be a know-it-all, but I'm posting this to help future celiac members! :)

The older version of the DGP, the AGA or anti-gliadin antibody tests are fairly useful for both diagnosis and monitoring dietary compliance.  I know the DGP claims it is more sensitive but when I do repeat antibody testing every couple of years, I use Genova Labs because they were the labs where my blood work was done for diagnosis.  For the consistency thing and all.  What surprised me was that there was only a slight difference between the results for both.  I mean, like 1-2 points of difference, which is not much at all.  I  think you could really use either test for diagnosis or compliance but Genova uses both tests, which I found interesting and more unusual.  Maybe it catches more Celiac in people that way?

I think doctors need to be more consistent with Celiac testing and not do what they do with thyroid testing.....only using one test out of the panel.  They also need to stop using the tTg for dietary compliance!

Laura.D Newbie
Laura.D
Posted
  • Author

Just to clarify, I never went back to that same doc after he acted like he didn't take my Celiac seriously, After he did the procedure and told me I was fine I decided not to go back, so it's not that he's outright refused to do it again, it's just that he was sure I didn't have Celiac Disease in his mind all along, so I just decided he wasn't going to be helpful. I started going to a new GI doc and he is in the same health system, I've only seen him once so far, and since he works in the same health system as the former doctor, he was just going off the previous doc's records and results instead of running new tests - but I haven't asked him to yet either. He mentioned at my visit that the only way to get accurate results would be to have me eat gluten for a month, which would probably make me pretty sick. I'm going to make a new appointment with him because he seemed to be the most helpful so far. 

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. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest ...
    4. Peace lily
      - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

      Hi everyone well I don’t understand totally,I look for gluten-free only. I seem to be super sensitive. I had a problem the other day don’t know why it happen . I’m the only that handles my food . My husband has pancreatitis he’s fine with me cooking gluten-free I’ve tried doing both it doesn’t work for me strictly gluten-free kitchen. But he can actu...
    5. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
×
×
  • Create New...