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

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

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

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

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

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

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
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

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

Guest nini

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

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

floridanative Community Regular

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
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
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

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
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

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

Stephanie

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,112
    • Most Online (within 30 mins)
      7,748

    tomhaley
    Newest Member
    tomhaley
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
    • rei.b
      So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers. As stated in the post, I don't have any vitamin deficiency. I was already tested.
×
×
  • 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.