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Its Offical!

VydorScope

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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!

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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.)

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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 :)

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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

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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.' !!

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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

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VydorScope Proficient
VydorScope
  • Author
Posted
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:

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Carriefaith Enthusiast
Carriefaith
Posted

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

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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...

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KaitiUSA Enthusiast
KaitiUSA
Posted

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

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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)

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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

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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

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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.

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VydorScope Proficient
VydorScope
  • Author
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.

Err.. thanks I think LOL!

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skbird Contributor
skbird
Posted

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

Stephanie

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      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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      Why?

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      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
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      Why?

      By trents · Posted

      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Why?

      By mishyj · Posted

      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
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