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

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

  • 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. Anne G
      - Anne G posted a topic in Related Issues & Disorders
      0

      celiac disease and braces

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and...
    2. trents
      - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    3. HAUS
      - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free...
    4. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    5. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,434
    • Most Online (within 30 mins)
      7,748
    Malia Ana
    Newest Member
    Malia Ana
    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

    • Anne G
      celiac disease and braces

      By Anne G · Posted

      Hello, My 17 yr old daughter was diagnosed with celiac disease 2 yrs ago. She does not have gum disease and no history of cavities. Her dentist is recommending braces for her lower teeth but I read it may worsen gum recession or possibly increase cavity risk which I know are already issues for patients with celiac. Has anyone here had braces and did it cause any problems or issues with gum recession?  Her dentist seemed oblivious that celiac patients are at higher risk of gum disease /cavities. Her bottom teeth are crooked but are pretty hidden even when she smiles. Thank you!!
    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
×
×
  • 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.