Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

What Do You Do?


SillyYakMom

Recommended Posts

SillyYakMom Rookie

If there is a friend who comes to you with every symptom in the book, her children have the symptoms, her dad has had intestinal cancer, brother has lymphoma, cousins have Chrone's, was told she has IBS, etc. etc. and finally goes to the doctor to get her children looked at for it and you swear they got it wrong?? Everything she has told me sounds CLASSIC. She went to the same hospital my relatives went to who had possitive biopsys and whos gastroenterologist told them to go off of dairy INSTEAD of gluten??? :blink: She had her kids get the blood test and the doctor said "Everything looks fine so we won't do a biopsy." The blood test isn't fool poof, the biopsy is and from everything I have heard from that hospital they don't know what they are doing or looking for. So they said her problems and her kids problems are just cronic constipation. When people come to me complaining of things and asking questions I tell them what they can do to see if it is celiac disease and then they go to these terrible doctors who tell them to cut out dairy? It's sad to me, because her family has all these problems and after all I have heard it sounds just like it and if she only had someone tell her what it REALLY is she would do it. And if she only knew how much better life is without eating what is like pioson to a celiac she would empty her whole pantry. But maybe you guys know what it is like where it was amazing that you got someone to listen to you enough to persue medical help and it didn't turn out. This I guess is more of a vent, but wanted to know what you would do.


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



Celiac.com Sponsor (A8-M):



CarrieinIowa Newbie
If there is a friend who comes to you with every symptom in the book, her children have the symptoms, her dad has had intestinal cancer, brother has lymphoma, cousins have Chrone's, was told she has IBS, etc. etc. and finally goes to the doctor to get her children looked at for it and you swear they got it wrong?? Everything she has told me sounds CLASSIC. She went to the same hospital my relatives went to who had possitive biopsys and whos gastroenterologist told them to go off of dairy INSTEAD of gluten??? :blink: She had her kids get the blood test and the doctor said "Everything looks fine so we won't do a biopsy." The blood test isn't fool poof, the biopsy is and from everything I have heard from that hospital they don't know what they are doing or looking for. So they said her problems and her kids problems are just cronic constipation. When people come to me complaining of things and asking questions I tell them what they can do to see if it is celiac disease and then they go to these terrible doctors who tell them to cut out dairy? It's sad to me, because her family has all these problems and after all I have heard it sounds just like it and if she only had someone tell her what it REALLY is she would do it. And if she only knew how much better life is without eating what is like pioson to a celiac she would empty her whole pantry. But maybe you guys know what it is like where it was amazing that you got someone to listen to you enough to persue medical help and it didn't turn out. This I guess is more of a vent, but wanted to know what you would do.

<{POST_SNAPBACK}>

I can understand what you are feeling frustrated about. My whole family has a problem with gluten but none of us have tested positive in bloodwork. I am the only one to have a biopsy so far and it came back normal---though, honestly, I haven't trusted the way my tests were run. We all feel better gluten free and that is the best test. Unfortunately, doctors don't tell their patients that the tests they are administering may not be fool proof. Neither a biopsy or bloodwork means that someone does not have celiac or a gluten sensitivity---it can only rule it in.

You need to encourage your friend to research this more and if they have already been tested it won't hurt for them to try being gluten free---if they feel better then that is proof enough. Though I don't know if it always clears up quickly for people on the diet--they may need to give it a few months and of course, there can be other issues as well. I'd recommend the book Dangerous Grains and the ever-controversial Enterolabs website for more information for your friend.

Carrie

Iowa

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...