Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
* * * * * 1 votes

How Did Your Doctor Tell You?


  • Please log in to reply

22 replies to this topic

#16 RacerX35

 
RacerX35

    Community Member

  • Advanced Members
  • PipPipPip
  • 50 posts
 

Posted 24 August 2011 - 11:01 AM

I started checking it out when suggested through somebody on epilepsyfoundation.org gave me links to information describing my epilepsy diagnosis with gluten sensitivity. My neuro couldn't read the paper that I printed out for him, but sent me in for a blood test. I went to my primary doctor and when he read the medical paper that I had shown my neuro, he said, "Well that's got your name written all over it. Doesn't it." He looked at my blood tests and asked if I had already started a gluten free diet before the test, to wich I replied that I may have (I couldn't remember, but think I had :unsure: )". I guess the test came up with for tests of my blood, two of wich came up positive and two negative. He told me that it could've been that way if I had already started a gluten free diet and the best way to find out would be to go back to gluten for a month and see if there is any difference. I tried that and started to have mild seizures again in about a week. My doctor has been able to help me out since his daughter has celiac disease and they have actually written a cook book on the subject. I haven't bought their book, but have gone gluten free. I have not had many seizures, but may have a mild one or a few after consuming gluten now, luckily no where near to the degree that I used to have. So that's my story on it. Gluten sensitive, but not celiac, thank goodness. B)


Later,

Ray
  • 0

Celiac.com Sponsor:

#17 adab8ca

 
adab8ca

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 255 posts
 

Posted 24 August 2011 - 03:24 PM

My tests were actually ordered by a neurologist to RULE stuff out! (no GI symptoms)Went to my GP for followup and she said "tell me about the tests that Dr X ordered", so I told her about the appointment (although truthfully I did not know WHAT he tested me for at the time). I actually went to the neuro for all my neuropathy problems. Anyway, GP says "your antibodies are screaming high for Celiac and I never would have guessed this". She sent me to a dietician (whose brother has celiac) and she was great! She immediately ararnged a bunch of tests and bone density scan and my appt with the GI. I guess I was one of the lucky ones.
  • 0
TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#18 CourtneyLee

 
CourtneyLee

    Community Member

  • Advanced Members
  • PipPipPip
  • 68 posts
 

Posted 26 August 2011 - 03:47 PM

My mum and I were told by my old doctor (he has now retired) that if the test came back positive, he would call us. He didn't call us, but something in my gut instinct(haha) told me it was coeliac, after researching about it online.
I called and made an appointment, and when we got there, he just blurts out of nowhere and goes "You have coeliac disease"
I thought it was really unprofessional and I wasn't prepared for it at all :angry:
  • 0

courtney xo


#19 Googles

 
Googles

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 440 posts
 

Posted 27 August 2011 - 08:23 PM

Thanks everyone for your replies. I wish that doctors did a better job of providing the diagnosis, even though at that point they often can't do much. It seems like giving a life changing diagnosis should deserve some respect.
  • 0

#20 watata

 
watata

    New Community Member

  • Advanced Members
  • Pip
  • 24 posts
 

Posted 27 August 2011 - 09:48 PM

I spent 2 weeks at the Mayo clinic having every test imaginable. I had a biopsy that was positive and blood work that showed the gene connection and a weak positive on blood work. Have had gastro issues for years and worse the last 4 months. Constant nausea. They didn't really say this is what you have. Just met with the dietician who gave me loads of info and then my final appt with GI told me blood result and biopsy and to go Gluten free, and they would retest in a year to make sure numbers were going down and intestines healing. I was a little disappointed with my GI as he was not very compassionate or willing to answer all my questions. To go on a referral for Autonomic Nervous disorder only to find out I do not have that and have celiac and a large cyst that I am to follow up with my doctors back home unless I wanted to drive back 8 hours to see a doc there in 2 weeks. Not as efficient as they make Mayo sound. But at least they found out why I have been so miserable. More than I can say about what happened for years of being referred in circles here. And kudos to an amazing dietician, although a bit rushed, was very informative.
  • 0

#21 zus888

 
zus888

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts
 

Posted 28 August 2011 - 06:01 PM

Wow. I'm so sad to hear all these stories. My doc was wonderful. He's been following my care for a couple years, and my endo was part of the monitoring of my crohns disease. It just so happened that he found the blunted villi (via biopsy). I can't remember how I was told (over the phone or at the office). My memory is no good even though I was only diagnosed this February! What I do remember is the office visit where he talked to me about my biopsy results at length. Told me MANY times that he strongly recommended that I go on a gluten-free diet. Talked to me at length about the disease, where I can find information, and gave me websites and the web address of a recent conference. He gave me information about a local gluten-free bakery and insisted I talk to the dietician. I was unconvinced, so he gave me an Rx for the blood tests (since I insisted).

The dietician was full of information and gave me so many things to take home (booklet, copies of local restaurant menus and coupons, etc.). Everyone was compassionate, but also adamant about the seriousness of the disease.

I didn't realize how lucky I am to live in the Pittsburgh area. They seem to have really awesome docs here.
  • 1
Suzanna

#22 CRashster

 
CRashster

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 28 August 2011 - 06:17 PM

My doctor didn't tell me. I will be telling him.
  • 1

#23 angel9165

 
angel9165

    Community Member

  • Advanced Members
  • PipPipPip
  • 49 posts
 

Posted 29 August 2011 - 10:56 AM

I got a phone call on my birthday and was told I have Celiac disease. Not having a clue, as they were looking for why I was anemic and hadn't considered the 25+ years of IBS might be related, I asked "how do you spell that?". She told me how to spell it and that I was going to have to rid gluten from my diet so naturally my next question was "what is gluten?". I don't remember much after that...I heard something like blah, blah...no bread, no pasta...blah, blah...no beer, no pizza....blah, blah...then I started to cry. My follow up appointment was almost a month later and by then, I had done all the research and had found this Godsend of a website. Basically I spent 5 minutes with him and was told to go talk to a nutritionist.

That will a year ago this Thursday...life is so much better now that I know. B)
  • 0
Diagnosed w/ Celiac disease on Sept 1st, 2010




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: