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.

  • 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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.