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

Should I Change Doctors?


Aeval

Recommended Posts

Aeval Rookie

Hi,

I just joined this forum today and I need some advice. My doctor wants me to go off grains. I have never been tested for Celiac Disease, do not have any of the symptoms and, as far as I know, am not related to anyone who has it. I have recently recovered from adrenal fatigue but my DHEA is still way to low. My doctor thinks going off grains will help. When I ask her why, she says because I have Celtic, Nordic and Germanic ancestry. This doesn't sit well with me as an explanation. I said, "Why don't you test me for an allergy or an intolerance?" She says that she doesn't think I have an allergy or an intolerance. She thinks I have "wheat toxicity" and there's no test for it. She says there's some type of test she can give me after I've been off grains for three months that will show if I have anti-bodies but I have to be off the gluten for a while first. She says if she gives it to me now, no anti-bodies will show up because I've got grains in my system. Or something like that.

Does this sound right? Has anyone out there ever heard of wheat toxicity? Is it different than intolerance? Is my doctor crazy? Should I run from her office and never look back? Giving up gluten just seems like a big lifestyle change to make for an uncertain reason.

Thanks,

Aeval


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



Celiac.com Sponsor (A8-M):



Guest memoryofaspyn

Aeval,

I am very new to this also, but to my understanding you want to be on gluten while they test you. They ran my blood work, and I wasnt off of gluten, I didnt even know they were going to test me until I was there. I am sorry I am not much help, but I am sure some one else out here will have better info for you. You are in the right place, everyone here is great!! Good luck!!!

gf4life Enthusiast

Your doctor has it backwards. You need to be ON gluten grains for at least three months for the antibodies to show up. Please print out some articles about celiac disease/gluten intolerance to take to her that talk about this.

Some good ones are:

University of Chicago

Open Original Shared Link

University of Maryland

Open Original Shared Link

Columbia University

Open Original Shared Link

American Association of Family Physicians

Open Original Shared Link

And should you test negative on the bloodwork and still are looking for answers please read these:

https://www.celiac.com/st_prod.html?p_prodi...-41104189220.0e

Open Original Shared Link

I hope this helps.

God bless,

Mariann

Aeval Rookie

Thank you both for your letters. I have sent copies of a couple of those articles to my doctor. Hopefully they will help.

Take care,

Aeval

  • 3 weeks later...
livingwithceliac Newbie
:blink: Actually your doctor sounds GREAT! The first doctor I saw opted to give me a full endoscopy to see what was wrong with me, which revealed nothing at all. A complete waste of thousands of dollars. I WISH he would have said something about Celiac disease or wheat intolerance!
  • 2 months later...
jenbody2003 Newbie

The doctor does have it backwards, they are to test while ON gluten. They test for three types of IGA antibodies but you want to make sure she orders the right tests and that the lab has the knowledge to run the right tests at the lab. It took three tries before my pediatrician had it right, even though he had heard of the disease. You can also have the disease without any symptoms.

Print this info to keep on hand for any doctor or specialist...

Open Original Shared Link

:D

But some words of advice...

A relationship with a doctor should be a partnership where you feel comfortable with your conversations and feel free enough to ask questions. If this is not the kind of relationship you have with your doctor, you can try to change that or go with your gut if you think that this doctor is not for you.

Good luck and God Bless!

  • 2 months later...
starlitgrl27 Rookie

I would definitely get tested. My family practice doctor that I used to go to told me that I had a mild gluten-intolerance and that i should just start a gluten-free diet. She didnt run a gene test, didnt do an endoscopy or colonoscopy or anything like that to confirm I had celiac. She just left me hanging! And no one else in my family has it, so I dont know where it would have come from. Now I am seeing an incredible gastroenterologist who thinks I dont even have celiac! I've been on the diet for six months! So now he's gonna have me go off the diet and do real tests to make sure i really have it. The moral of my story is, it's not worth all the trouble if you can't confirm it.


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



Celiac.com Sponsor (A8-M):



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. - pilber309 replied to pilber309's topic in Related Issues & Disorders
      13

      Burning Sensation in the small intestine

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      36

      My journey is it gluten or fiber?

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      36

      My journey is it gluten or fiber?

    4. - knitty kitty replied to pilber309's topic in Related Issues & Disorders
      13

      Burning Sensation in the small intestine

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,887
    • Most Online (within 30 mins)
      7,748

    eab
    Newest Member
    eab
    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

    • pilber309
      I eat a lot of dairy but its intermittent is this burning so I would assume it would happen all the time. Plus I have been tested for lactose intolerance  etc and I am fine and the other symptoms of that I don't get. As a aside  my dad died last month after a long illness so I wonder if the stress of that might be a influence as a bodily reaction to stress.
    • pilber309
    • knitty kitty
      You should be fine.  You may start feeling better within a few days.  Someone who is very low in thiamine may notice improvement within hours.   Did you get the NeuroMag  or another magnesium supplement?
    • xxnonamexx
      Yes Bobs redmill cgf oatmeal I started when I became gluten-free. So taking all 3 with breakfast should work? Will I notice any reactions getting used to these or should I be fine. Thanks
    • knitty kitty
      Hello, @pilber309, welcome to the forum! Are you currently consuming dairy?   You mentioned something about lots of yogurt and cheese, but did you cut it out or are you eating lots of it?   Could you clarify please? Some people with Celiac react to casein, the protein in dairy the same as to gluten with antibodies and villi damage. 
×
×
  • 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.