Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Please Help Me Understand My Results


  • Please log in to reply
19 replies to this topic

#16 Chaff

Chaff

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 108 posts

Posted 02 December 2012 - 09:26 PM

I'll try to convince my doctor to do it (US military doctor) -- thanks for the advice!
  • 0

celiac, hypothyroid, hereditary hemochromatosis
 


Celiac.com Sponsor:

#17 GottaSki

GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,083 posts

Posted 02 December 2012 - 09:38 PM

Hi Amelia-

A military doctor - as well as many other docs respond well to preparation. When is your appointment?

List of symptoms.
List of necessary tests - both celiac and nutrient
If needed a few print outs from top Celiac Centers.

Never hurt.

Let us know if you would like a few items to bring along to your appointment.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#18 Chaff

Chaff

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 108 posts

Posted 03 December 2012 - 03:01 AM

Hi Lisa -- thanks! It's my GI doctor, who is the only one for the Asia-Pacific region, and a really good guy. All the others I've seen immediately said I need to see a mental health professional (for anorexia and body image issues of all things), and only ordered tests after I begged them. He just heard me out and said -- why aren't you on any medication for all this?

Anyway, I gave him my notes and lists of symptoms and whatnot and he just handed it back to me without reading it and fired a bunch of questions at me. But I figure he knows what he's doing, since he did my endo like a pro.

At this point, I'm just getting my biopsy test back. If it's negative, I figure I'm "latent" celiac (i.e., they missed the bad patches); if it's positive, then I'm "celiac." But either way, I'm asking for a genetic test, testing for SIBO, and some good probiotics (no gluten-free ones in Japan I can find, and Amazon's freeze-dried ones are coming on the slow boat).

Does that sound like a good game plan? Or should I be doing something else?

(One doctor said my preparation...like measuring my distended belly...would make the other doctors think I was crazy, so I shouldn't mention it to them. This is what I'm dealing with. Argh.)

Anyway, thanks very much for the help. :)
  • 0

celiac, hypothyroid, hereditary hemochromatosis
 


#19 GottaSki

GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,083 posts

Posted 03 December 2012 - 06:38 AM

I think that is a great plan -- I never hand docs anything but medical journal papers :P

The reason I have lists of symptoms, questions and tests in hand during appointments is to make sure I don't forget details or to ask questions. I let them know I had pictures when I started taking pics of rashes and they did want to see those...you just never know.

Regardless of your results, remove ALL gluten for at least three months (six is better) -- this is the only test for Non-Celiac Gluten Intolerance.

If only we could get our money back from dismissive doctors ;)

Hang in there - keep documenting - I waited too long to document. This information may be of help with your future doctors. Also, if you ever decide to get a genetic test - no gluten challange is required :D
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#20 Chaff

Chaff

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 108 posts

Posted 03 December 2012 - 10:52 PM

Thanks for the advice!
  • 0

celiac, hypothyroid, hereditary hemochromatosis
 



0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: