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

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
      132,626
    • Most Online (within 30 mins)
      7,748

    Durenda Driskell
    Newest Member
    Durenda Driskell
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Shingles is dormant and related to chicken pox when one has had in the past.Shingles comes out when stress is heightened.I had my 3rd Shingles in 2023.
    • knitty kitty
      Here's one more that shows Lysine also helps alleviate pain! Exploring the Analgesic Potential of L-Lysine: Molecular Mechanisms, Preclinical Evidence, and Implications for Pharmaceutical Pain Therapy https://pmc.ncbi.nlm.nih.gov/articles/PMC12114920/
    • Flash1970
      Thank you for the links to the articles.  Interesting reading. I'll be telling my brother in law because he has a lot of pain
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
×
×
  • 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.