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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,780
    • Most Online (within 30 mins)
      7,748
    Momma Kai
    Newest Member
    Momma Kai
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Ok thank you.  Me either 
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.