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Evaluation By Dr. Fasano


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5 replies to this topic

#1 BabsV

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Posted 26 September 2012 - 05:30 AM

Yes, I am woefully behind in getting this info posted. Sorry.

After what I considered substandard care post-diagnosis I decided I would see a specialist when we returned to live in the U.S. I was happy to find that Dr. Fasano was about an hour away from where we'd be living so made an appointment. I called in April and was able to get an appointment on July 31st (he only sees patients once a week and there'd been a cancellation.) If I hadn't taken that appointment I would have had to wait until mid-late September.

So don't expect to get in quickly!

As for the actual appointment, it fit my expectations and basically went as follows:

1. Check-in
2. Get weighed, blood pressure checked, etc.
3. Meet with one of the team doctors (along with trailing medical student...University of MD is a teaching hospital after all!) to discuss history, why you are there, etc.
4. Team doctor goes to consult with Dr. Fasano
5. After team consultation Dr. Fasano comes to talk with you and gives you recommendation for course of treatment
6. You then meet with the nutritionist and then the nurse who asks if you would be willing to participate in their ongoing study...basically it means they can use your medical file (I agreed)
7. The end!

I liked that all the staff were friendly and helpful. I did not have to wait for length of time to get into the appointment -- mine was at 1pm and by 1:10pm I was talking with the team doctor. Speaking with doctors who know, really KNOW, about Celiac Disease was a relief -- the team doctor took one look (upside-down since I had it in my hand) of a copy of my biopsy report which I'd brought and said, "Oh yeah, you were at Marsh 3," which is something no other doctor had ever volunteered before! Plus they find it 'worrisome' that I am still anemic a year post-diagnosis. All my other doctors didn't seem to worry about it...

I brought copies (and translations) of all my medical records related to my Celiac diagnosis which made the staff all very very happy.

I left with a nice list of tests to either repeat or have done -- I needed additional blood tests to check vitamin levels, a bone density scan (since that couldn't be done in Poland due to the machine being "serviced" for 6+ months!), and Dr. Fasano wants another scope to check to see if there is an 'organic' explanation for my continued pain issues. Dr. Fasano is trying to have it become standard that all Celiacs have another scope a year post-diagnosis to check on levels of healing regardless of symptoms.

The team doctor told me the continued pain is not uncommon in Celiacs who are diagnosed as adults...often because we heal so slowly compared to kids. Great. But they all agreed that the pain issue was NOT "in my head" and they wanted to work to eliminate it or decrease it as much as possible. That was heavenly to hear after doctors telling me to "just relax" and hey, "take this antidepressant"?!?!?!

Once all my test results are in they will review my file and let me know if I need to come back to see them or if I can just work with my local doctors under Fasano's recommendations.

I didn't walk out with any immediate answers but just having my suspicions of lack of adequate follow-up was somewhat of a relief plus having a plan of action versus the whole "take antidepressants" approach was great.

If you have the time, opportunity and money (I keep telling my husband how thankful I am he's got a good job with decent health insurance benefits!) and are experiencing continued health issues I recommend seeking out a specialist if there is one remotely close to you.
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#2 IrishHeart

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Posted 26 September 2012 - 05:53 AM

Babs,

I know we have discussed this already, but I have to say it again:

I am so very glad you are home !!! and that you received the proper follow up care you deserve. (we all deserve)

(and on top of everything else, Dr. Fasano is rather good looking, to boot. ;) )

Thanks for the report and I hope you continue to feel better and better.

xxoo IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 BabsV

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Posted 26 September 2012 - 08:18 AM

(and on top of everything else, Dr. Fasano is rather good looking, to boot. ;) )


He is indeed. I almost asked to get a photo with him BUT with the team doctor, the medical resident and my dear hubby also in the room it seemed a little on the fangirl side to do so! Hehehehe.
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#4 IrishHeart

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Posted 26 September 2012 - 09:18 AM

He is indeed. I almost asked to get a photo with him BUT with the team doctor, the medical resident and my dear hubby also in the room it seemed a little on the fangirl side to do so! Hehehehe.



Oh man, you should have gone for it, Babs!! you should have taken one for the celiac girlfriend team!! :lol:
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 kittty

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Posted 27 September 2012 - 08:34 AM

But they all agreed that the pain issue was NOT "in my head" and they wanted to work to eliminate it or decrease it as much as possible.


What magical words! I would love to hear this from a doctor just once. :)
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#6 IrishHeart

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Posted 27 September 2012 - 12:44 PM

What magical words! I would love to hear this from a doctor just once. :)



I finally heard it, but I was 54 years old.

Hope you do not have to wait that long, hon.

If it helps, I'll tell you:

The pain is NOT all in your head. It's not.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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