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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BoiseNic posted a topic in Dermatitis Herpetiformis
      0

      Skinesa

    2. - Wheatwacked replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins

    3. - trents replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins

    4. - llisa replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins

    5. - trents replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,238
    • Most Online (within 30 mins)
      7,748

    Christi Brown
    Newest Member
    Christi Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BoiseNic
      Anyone try this? No matter what the brand, probiotics have ALWAYS made me break out bad. I am hesitant to try this simply for that fact, but I ordered a 3 month supply. Any input would be appreciated. Wish me luck.
    • Wheatwacked
      @llisa, I am curious to know how much vitamin D you are taking and what is your plasma level in nmol/L or ng/ml what the doctor's target 25(OH)D is. Hopefully with the gluten free diet you'll be able to feel better.
    • trents
      Yes, but if you had been avoiding bread because of the stricture, that might explain the negative result of the previous celiac antibody test.
    • llisa
      Hashimoto diagnosed over 20 years ago after my daughter was diagnosed and told me to get checked due to similar symptoms. Diabetes diagnosed same time. Exocrine pancreatic insufficiency this past summer. Celiac last Wednesday. Have been having the digestive issues for a couple of years, several doctors--thought we had it solved with the Creon. Then symptoms got worse. I have a theory about that. I have a stricture in my esophagus that has to be dilated every 6-8 months. When it is tight, I have trouble swallowing. Bread is one of the harder things to swallow, so I avoid it. Had the stricture stretched end of October and started eating bread again. That's about when the diarrhea, bloating, gas, and pain started getting worse. Went in for another upper endoscopy and dilation of stricture last week. (It had been so tight this time, he scheduled a second dilation one month after the first.)  I told him how miserable I'd been, and he did the small intestine biopsy. I know they did the blood test for celiac about a year or more ago trying to find source of my problems,  and it was negative.
    • trents
      Diabetes and Hashimoto's as well, huh? You are the epitome of the autoimmune cascade effect. That is, once you get one autoimmune condition you tend to develop others. But I am curious. In the sequence of these several autoimmune diagnoses, where did the celiac diagnosis come? You certainly have a lot of health issues to juggle.
×
×
  • Create New...