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

Its Offical!

VydorScope

Recommended Posts

VydorScope Proficient
VydorScope
Posted

Doc called me this AM. We reivewed my case completely, including the all the silly tests, and she siad its offical, I have celiac disease. Now she wants to do a bone screening so that they have on record to monitor since Osteroprosis is a big concern in her opinion.

I have some bone fractures in my back that she was a bit upset that I did not tell here about. LOL Im a horrible patient. :)

So thats that!

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

Celiac.com Sponsor (A8-M):


dlp252 Apprentice
dlp252
Posted

Congratulations?! LOL, not sure whether THAT is appropriate, but at least now you have the official diagnosis. (I'm a bad patient as well...I intend to tell them stuff, but usually forget.)

jerseyangel Proficient
jerseyangel
Posted

Vincent--Well now you don't have to have that "but what if its something else" doubt. Good that you know for sure--at least now you know what to do and will do so much better as time goes on. Hope you and your family have a nice holiday :)

key Contributor
key
Posted

Vincent,

CONGRATULATIONS!!!!!!!! Ha, I just had to word it that way. I post here alot and see you. My son has celiac and my blood tests were borderline after being gluten free for 5months. SO anyway, It is frustrating wondering for sure, but now you know and are on the road to recovery. No more cheating! I don't cheat, because I get horribly sick, so not worth it to me of course. That is my diagnosis! No, but it would be great to take a letter stating CELIAC DISEASE to my mom, who every once in awhile says, "well maybe you don't have it!" GRRR! Whatever, I am not going to be sick for someone else.

Hope you start feeling great soon.

Monica

Mommy to Connor 21 months old, also with celiac disease

jenvan Collaborator
jenvan
Posted

yes, congratulations i guess! this has been such a long process for you. i'm sure you're glad to 'have it over.' !!

mommida Enthusiast
mommida
Posted

I'm so glad you have your "official" diagnoses. Congratulations! Your drive to get the answers, was the main reason for diagnoses.

Would you consider, to claculate the number of appointments, tests, medical cost, and time for your diagnoses? I think that would be helpful for new posters, and an eye opener for society how important Celiac Disease/gluten intolerance awareness is.

Laura

VydorScope Proficient
VydorScope
Posted
  • Author
Would you consider, to claculate the number of appointments, tests, medical cost, and time for your diagnoses? I think that would be helpful for new posters, and an eye opener for society how important Celiac Disease/gluten intolerance awareness is.

Laura

Wow, umm call it 2 years since onset of Anemia that started it, each year maxed out my "out fo pocket maxium" for my isurance... soo umm $2500 per year, that includes my son's testing/etc too though. Time? Gosh unmeasureable! Sorry, but dont have anything more exact then that.

My doc was very supportive through out it, and sent me to two different GI docs for the testing (I did not like the first one at all!), and redid any test I asked, reguardless of previous results.

As for how it came about officaly, a combination of the fractures in my back (should have told her sooner!! bah!), Iron Deficent Anemia, BP (spiking high on gluten, normal off), and the GI symptons, plus my son's diagnosis with the same IGA low score, and all my symptons lining up with the going on and off the gluten-free diet. Add to that my grandfathers death from what now appears to be celiac disease complications, and she considered that whole mess diagnostic.

Was funny to hear the tone in her voice chnage slightly when I mentioned the factures for the first time, man Im a horrible patent! LOL. I got the impressoin that could have saved her alot of testing LOL. I personaly never made the connection. I have all the films that show it, so going to get them to her for my file, she mentioned that I needed to do that several times in our conversation. :D

For all of you that suffered through my on again/off agian posts and told me to stop eating gluten.. heh guess you can all say "TOLD YA SO!" now :lol:

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

I'm glad that you have a diagnosis and can start feeling better.

Guest nini
Guest nini
Posted

Well, I wasn't going to say told ya so, but since you said I can... :lol::lol::lol:

just kidding... I know it's been a long tough road for you and I hope that now you are on the road to recovery. Remember that it takes time to completely heal and some of the damage done like to your bones, may never be completely normal again. Here I am two years into this and am still having problems. Glad you have the official diagnosis now for your own piece of mind...

KaitiUSA Enthusiast
KaitiUSA
Posted

Good to hear that after everything you have been through. Congrats on the official word:)

floridanative Community Regular
floridanative
Posted

Wierd to say but great news VydorScope!! Your persistence in looking for and finally gettings answers gives the rest of us on the same journey hope.

Happy (gluten free) Holidays to you! B)

Nevadan Contributor
Nevadan
Posted
Now she wants to do a bone screening so that they have on record to monitor since Osteroprosis is a big concern in her opinion.

I have some bone fractures in my back that she was a bit upset that I did not tell here about. LOL Im a horrible patient. :)

So thats that!

Congrats on your persistence to get a dx. Be certain to do the bone density testing - and post your results. My most serious symptoms are osteoporosis and anemia. Osteo is a very silent disease! Get on that gluten-free diet and stay there.

George

nettiebeads Apprentice
nettiebeads
Posted
Doc called me this AM. We reivewed my case completely, including the all the silly tests, and she siad its offical, I have celiac disease. Now she wants to do a bone screening so that they have on record to monitor since Osteroprosis is a big concern in her opinion.

I have some bone fractures in my back that she was a bit upset that I did not tell here about. LOL Im a horrible patient. :)

So thats that!

I"m glad you can start your road to a healthier life now. Be sure to do what the drs says and get those films of your back to her. You are going to have to keep up your health for your son - he'll only get bigger and even more active!! And I think of my mother who used to be 5'10" but now is so bent over from osteoporosis that she has to look up to me (5'7") and is in a wheelchair because of spinal stenosis and hip fractures.

Annette

debmidge Rising Star
debmidge
Posted

as my husband says in the words of "the Borg":

We are celiac, we will assimilate you. Resistance is futile.

Congratulations on officially joining the ranks of those who are pioneers in this era where this newly emerging condition will be finally recognized by the medical establishment and will be diagnosed better.

VydorScope Proficient
VydorScope
Posted
  • Author
as my husband says in the words of "the Borg":

We are celiac, we will assimilate you. Resistance is futile.

Congratulations on officially joining the ranks of those who are pioneers in this era where this newly emerging condition will be finally recognized by the medical establishment and will be diagnosed better.

Err.. thanks I think LOL!

skbird Contributor
skbird
Posted

Congrats, Vincent. I know how much this means to you. Yeah!!!

Stephanie

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,438
    • Most Online (within 30 mins)
      7,748
    rednecksurfer
    Newest Member
    rednecksurfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.