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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,339
    • Most Online (within 30 mins)
      7,748

    Teresa King
    Newest Member
    Teresa King
    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

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.