Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Omg- I Got A Diagnosis!

Guest BERNESES

By Guest BERNESES
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest BERNESES
Guest BERNESES
Posted

Just wanted to let those of you who were following my thread about seeing a Celiac specialist- Dr. Cheney at Beth Israel Hospital in Boston- that it was worth it! She called me today with my test results from Prometheus.....

I have one of the HLA DQ genes (I forget which one) and as she said, due to my "exquisite" sensitivity to gluten and having the gene, I have now been diagnosed as having Celiac's. She won't make me go through the gluten challenge and another endoscopy just for the sake of a biopsy because it would make me too sick.

Just 8 days short of being gluten-free for a year!

I'm leaving (right now) for 5 days but I'll elaborate when I get back. Sounds strange, but what a freakin' relief!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

YAYYYYYY!!!!!

Judyin Philly Enthusiast
Judyin Philly
Posted
Just wanted to let those of you who were following my thread about seeing a Celiac specialist- Dr. Cheney at Beth Israel Hospital in Boston- that it was worth it! She called me today with my test results from Prometheus.....

I have one of the HLA DQ genes (I forget which one) and as she said, due to my "exquisite" sensitivity to gluten and having the gene, I have now been diagnosed as having Celiac's. She won't make me go through the gluten challenge and another endoscopy just for the sake of a biopsy because it would make me too sick.

Just 8 days short of being gluten-free for a year!

I'm leaving (right now) for 5 days but I'll elaborate when I get back. Sounds strange, but what a freakin' relief!

Wow, I'm so happy for you to finally get results. This Dr. sounds like he/she has common sense like mine does.

congrats. Judy in philly

Carriefaith Enthusiast
Carriefaith
Posted

That's great news! I'm glad to know that they can make a diagnosis based on the gene test and a positive dietary response. She sounds like a great doctor!

Claire Collaborator
Claire
Posted

How fortunate you are!

I know how disappointed I am every time I luck out - again. An answer is a blessing.

Maybe I need a trip to NE - lived there for many years before coming to PA.

So glad for you. Claire

lonewolf Collaborator
lonewolf
Posted

Yay! I'm happy for you to finally KNOW for sure. Now I hope she can help you with some of your other questions too - she sounds like a great doctor.

jenvan Collaborator
jenvan
Posted

Rock on :)

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

B--So glad to hear you finally got a concrete answer. Have a fun, safe trip--talk to you when you get back :)

debbiewil Rookie
debbiewil
Posted

Congratulations!

(And maybe I need a trip to NE also.)

Debbie

Rusla Enthusiast
Rusla
Posted

Congratulations B!

I know that sounds funny to say but it is a relief to finally know what is wrong and how to fix the problem.

danikali Enthusiast
danikali
Posted

Congrats! And I mean it! I know EXACTLY how you feel! The same exact thing happened to me! I went to a million doctors, had negative blood tests, inconclusive biopsy, VERY POSITIVE DIET CHANGE and then I went to Dr. Green (the famous Columbia University Hospital Celiac Doctor) and he tested my genes, and finally, I got a confirmation of what I had suspected for a year! Just to hear a doctor tell me, yes, you have Celiac disease, is the best thing in the world! It really makes your day, I know!

Now your mind can be a little more at ease :rolleyes:

wolfie Enthusiast
wolfie
Posted

That is awesome that you got a diganosis!

Jen H Contributor
Jen H
Posted

Congrats on finding out the source of all your pain! You must be relieved to finally know what's going on.

hez Enthusiast
hez
Posted

I am so happy for you :)

Hez

Judyin Philly Enthusiast
Judyin Philly
Posted
Just wanted to let those of you who were following my thread about seeing a Celiac specialist- Dr. Cheney at Beth Israel Hospital in Boston- that it was worth it! She called me today with my test results from Prometheus.....

I have one of the HLA DQ genes (I forget which one) and as she said, due to my "exquisite" sensitivity to gluten and having the gene, I have now been diagnosed as having Celiac's. She won't make me go through the gluten challenge and another endoscopy just for the sake of a biopsy because it would make me too sick.

Just 8 days short of being gluten-free for a year!

I'm leaving (right now) for 5 days but I'll elaborate when I get back. Sounds strange, but what a freakin' relief!

Question

I re read your post.

My insurance won't cover the gene test at this lab.

I have the packet a friend gave me.

I didn't get a whole celiac disease blood panel done even tho my internest ordered it.

Seems they didn't think the #'s were high enough but my dr thought i had it an wasn't happy cause now i'm 6 months gluten-free. GI ordered the gene test insurance won't pay for..do you think i should pay the $400 out of pocket to put my mind to rest...to me and my GI if the gluten-free diet is working I HAVE IT.

WELCOME BACK FROM YOUR TRIP.

Judy in Philly

TCA Contributor
TCA
Posted

Our GI found a way around the insurance. He sends them to Mayo and they forward it to Prometheus. I'm not sure how, but Bc/BS will pay this way. Check into it for your situation.

Also - we just had the same thing with my daughter. She's only 9 mos. and the other tests weren't started before and gluten-free diet. LONG story. But she was DQ2 positive, so they say it's most likely Celiac. We had my son (3) tested Monday and are awaiting the results. He had 2 elevated enzymes and 2 negative biopsies that showed "inflamation", but no villous atrophy. I'm so glad you too got some answers. I know how relieved you are.

Judyin Philly Enthusiast
Judyin Philly
Posted
Our GI found a way around the insurance. He sends them to Mayo and they forward it to Prometheus. I'm not sure how, but Bc/BS will pay this way. Check into it for your situation.

I'm sorry :blink: what is bc/bd mean :lol:

I'm calling him soon as I think my thyroid, what's left of it must be low again.

Thanks for the post and idea.

judy

Nantzie Collaborator
Nantzie
Posted

Congratulations!!!!

TCA Contributor
TCA
Posted
I'm sorry :blink: what is bc/bd mean :lol:

I'm calling him soon as I think my thyroid, what's left of it must be low again.

Thanks for the post and idea.

judy

BC/BS is blue cross blue shield. That's the insurance we have.

Hope you feel better soon!

Rachel--24 Collaborator
Rachel--24
Posted

Judy,

Enterolab does the gene testing for $150. That sounds alot better than $400.

Judyin Philly Enthusiast
Judyin Philly
Posted
Judy,

Enterolab does the gene testing for $150. That sounds alot better than $400.

Thanks so much Rachel

I can handle that

have a great weekend.

j

Guest BERNESES
Guest BERNESES
Posted

Thanks Everyone- it was a HUG relief (sounds silly, but it's true). I have the HLA DQ8 gene. But not the DQ2. I am just so relieved to know for sure (although it was pretty darn apparent anyway!)

Judy- If it will put your mind at ease, I would do the Enterolab testing for $150 but if it's good enough for you and your doctor that you are responding to the diet, then that might be good enough! I just wanted it done because I had issues that weren't resolving and i wanted to make sure that's what it was and proceed from there. Even if the tests were negative, I would have stayed gluten free anyway (for life!).

nikki-uk Enthusiast
nikki-uk
Posted

So glad you finally got your 'official' dx.

I actually think it helps you a great deal psychologically once it's official.

Hope you are feeling ok ;)

celiac3270 Collaborator
celiac3270
Posted

Just saw this topic--Congrats! And at least we now know you'll still be posting and staying awhile. :)

Guest BERNESES
Guest BERNESES
Posted

Thanks everyone- not like I was going anywhere regardless of what the tests said. i'd miss talking about BM's and smelly gas with you guys too much! :P

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,979
    • Most Online (within 30 mins)
      7,748
    Anastasia A
    Newest Member
    Anastasia A
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Diabetic 2

      By trents · Posted

      There is no established connection between type 2 diabetes and celiac disease. There is a connection with type 1, however, as about 6% of those with type 1 diabetes also have celiac disease. This rate is 6x that of the celiac rate found in the general population. https://celiac.org/about-celiac-disease/related-conditions/diabetes-and-celiac-disease/
    • Lightingthunder2
      Diabetic 2

      By Lightingthunder2 · Posted

      I have now become diabetic 2 which I was told is anothor medical condition coeliacs can have.Ive been a coeliac for 15 years .I feel weak all the time I test my blood sugars every day.Im on medformin .Does any one has feel so weak that has coeliac and has. become diabetic 2?
    • Scott Adams
      Chicken Thighs

      By Scott Adams · Posted

      Here is a link to the skin version, and the only ingredients are "chicken": https://www.perduefarms.com/en-US/perdue-bone-in-chicken-thighs-pack/60625.html There should also be ingredients and any allergens listed there on the package.
    • trents
      Chicken Thighs

      By trents · Posted

      Welcome to the forum, @BeeBarnard! I really can't imagine how either skin or skinless chicken thighs could not be gluten free unless one or the other were treated with some seasoning ingredient that was not gluten free. Do the product labels indicate any additional ingredients added to the meat? Is your daughter a super sensitive celiac? If not, the amount of gluten cross contamination found in seasonings is usually inconsequential.
    • BeeBarnard
      Chicken Thighs

      By BeeBarnard · Posted

      HI, My daughter was recently diagnosed with Celiac and I would like to make her some chicken soup (she's got he flu). I found all gluten free ingredients but I'm having trouble with the chicken. I purchased Purdue bone-in chicken thighs from BJ's Wholesale Club. Purdue says that they are gluten free but the BJ's website says no. It seems like skin-on chicken is not, but skinless is. Does this seem accurate? Thank you
×
×
  • Create New...