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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!

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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 :)

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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

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