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

Doc Gave Me Huge Celiac Packet...

Karina

By Karina
in Doctors

Recommended Posts

Karina Explorer
Karina
Posted

Hi all! I just received my biopsy results from the doc's office, and there was damage consistent with celiac disease. The nurse set me up for an appt. three weeks away to discuss everything, and then she said she was sending me information to look over in the meantime. I wondered why so long before the appt. (she said doc specifically wanted to wait 2-4 weeks to see me), and now I know. I got the packet today, and there is like 150 pages of info here! They have sent me all kinds of brochers from gluten-free manufacturers, info on celiac disease, business cards of support group people in my area, a dieticians card who specializes in celiac disease, book listings, gluten-free consumer guideline (to be purchased), and on and on. I have to say that my experience with this doc has been a mixed bag. I've only seen him twice (consult, then endoscopy--he is a GI). He seemed to pick up on the celiac disease diagnosis immediately--he was pretty convinced before the bloodwork, and when the bloodwork came back he said we just needed to make it "official" and document it. From what I have read here about many others experiences I feel I should be impressed that he picked up on this diagnosis so quickly. BUT,...he said to me that if I have celiac disease (before the testing), I don't HAVE to do ANYTHING, if I don't want to. He said I could file it away for now if I wanted and if I could live with the symptoms, but he said that he knew a lot of people who felt great on the gluten-free diet, and it might be something to consider. Well, now that I have researched celiac disease, I know I cannot continue consuming gluten, I know it is very dangerous in fact and just asking for trouble....that is continued trouble....I don't even know what all I am dealing with, I figure I need a bone scan and some blood work to be able to treat whatever deficiencies may have been caused by this disease so far. I am surprised at my doc's attitude about the diet. On one hand he seems so informed, on the other is he was so informed he would be telling me "YOu better not eat any gluten, girl!" I know when he suggested celiac disease, I was like "NO WAY!, I know I don't have a problem with wheat--I LOVE wheat!" (I didn't know better), so maybe he was just trying to ease me into it or not scare me, I don't know. I was wondering what some of your thoughts about this doc were based on what I posted here. Also, does a GI manage celiac disease, or does your family MD? I know the patient really manages it, what I mean is--who is your "go to" person about celiac disease? I appreciate the responses! :rolleyes:

Karina

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

I'd give him the benefit of the doubt, since he does seem so knowledgeable. It may have been he was trying to emphasize that it is your choice, and not an _immediate_, _catostrophic_ danger to your health. (I don't dispute it's a danger to your health, I just mean that - if in your case the symptoms are not severe - you're VERY unlikely to die the day after you eat a slice of bread _because_ of the slice of bread.)

(I had one orthopaedist tell me that - with my knees - I should never run again. I left the office in tears. A subsequent (and better) orthopaedist, told me that - yes, if I keep running, I may need knee replacement surgery fairly early in life and that I will continue to have relatively severe pain. But he also told me that it is my choice and that I have to weigh for myself how much not running AT ALL will affect the rest of my life. It is a different situation, of course, because of the nature of the two different conditions. I'm just noting that some doctors like to remind the patient that the power of treatment is in the patient's hands.)

You might talk to him further about it, and understand where he's coming from before you look into switching doctors. It is possible he's good at spotting it, but not treating it, but it could be a misunderstanding as well...

travelthomas Apprentice
travelthomas
Posted

Hi Karina,

From my experience with celiac disease I drifted along feeling just okay, and then around the age of 43 I had a total melt down, after picking up some viral infection. If I hadn

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,350
    • Most Online (within 30 mins)
      7,748
    Bea71
    Newest Member
    Bea71
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.