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Dr. Fasano/celiac Ctr Visit


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14 replies to this topic

#1 anglepoise

 
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Posted 08 September 2004 - 08:17 AM

Hi...
Last Friday, I had my appt with Dr. Fasano & came away from it mildly disappointed. I don't want to knock Fasano, he is doing difficult & much needed work. The world could use more hims. But overrall, I guess I expected a bit more attention, or at the very least, consultation. I made the appt way back in April, & was told at the time that it would be around $100 for the visit. I was later sent an info sheet in the mail that said be prepared to spend a couple of hours there at the clinic. I was there all totalled for 3 1/2, the majority of that time spent waiting in a chilly examination room. I met with a clinician for about 1/2 hour, & she was great & friendly & helpful. My actual visit with Fasano probably lasted no more then 10 minutes. I didn't feel at liberty to ask him questions, though I certainly tried. He was so rushed & harried that I didn't get the chance to ask him 1/2 of what I had wanted to. After he briefly reviewed my history, we talked about the fact that I'm on the gluten-free diet & that I've been feeling much better then I have in years. He recommended that I get tested for Celiac as I haven't been officially diagnosed, but he made it clear that given my history, it was pretty obvious I had it. So the only benefit from me doing the "Gluten Challenge" or genetic testing would ultimately be to know how strictly I must adhere to the gluten-free diet. Not worth my time, energy & dollars really. Again, I don't fault him for his brusqueness, it was clear the place was packed that day. I realize circumstances probably keep him from giving more quality care to each individual. Still, I felt a bit brushed off & all to the tune of $250. I'm not going through with the testing right now, as I am way too busy, what with running a business and taking classes at the local university towards a degree, and I know that strict adherence to the gluten-free diet is the only way for me. Anyway, just wanted to vent. I guess I expected more in the way of answers & a chance to dialog with a professional about the condition. I hope everyone else has better experiences with his center...

Angel
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#2 kirst4588

 
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Posted 08 September 2004 - 05:11 PM

That is unfortunate - but like you said, there's so many reasons for him to only have so much of himself to give out - too bad there's not more 'hims' but until there are, so be it. On one hand, you want indesputable 'proof' via a clinical diagnosis, but you know your body, as only you could, and it is clear what the diet has done for you - I'm not really saying much am I? You made the choice I have made for my son, No Challenge - it's just not worth it. I don't know about your sensitivity, but my toddler has severe reactions to the slightest/undetectible cross-contamination, that is proof in itself for me! Good Luck.
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#3 tarnalberry

 
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Posted 08 September 2004 - 09:32 PM

I know what it's like to have a doctor like that - specialist in his field, well respected for his work in the field around the world. Sometimes, they only have so much in them, and they get worn out. I doubt I see the doc I drive down to San Diego to see (gyn specialist) for even 10 minutes, most of the time, but I know it helps him to remember his patients when I thank him for what he's done, and ask the most important questions first. (Of course, he took more time with me at initial visits, but I recall waiting for two hours after my appointment time at one point when he was stuck in surgery.) And it can be hit or miss. I'm sorry it wasn't a better appointment, but it sounds like you're in a comfortable place with what's going on at the moment, and that's good!
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 Guest_gillian502_*

 
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Posted 08 October 2004 - 12:31 PM

I saw Dr.Fasano about 3 months ago, and had exactly the same experience as you did. Why does that exam room have to be freezing, anyway?! Lol. I also spent most of my time talking to a PA, then the dietician, then 10 minutes with Fasano. He came in tossling his shoulder length hair like he was a rock star who hadn't slept in a week! Man, he was like the young, brash "Celiac Disease King" or something! lol! Anyway, it's great he is out there doing research and stuff for our disease, but he's just not a patient-oriented doctor. He only sees people on Fridays, 4 times a month only, and then gives only a few minutes of his time. I'm not blaming him, it's just that the better the expert, the less patient-oriented they're going to be. I've seen docs at Johns Hopkins, Mayo Clinic, and U. Of Md., and believe me, all the big wigs are like that.
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#5 debmidge

 
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Posted 11 October 2004 - 01:37 AM

I've noticed that too about doctors who are in research or teaching; their bedside manner is clipped and cold. They are good at what they do, but maybe they don't like having a "practice" either but must see patients due to contractual obligations to the hospital that they are affilated with or just need the $$ as research may not pay a lot.......

If you get to see him again, bring a lot of gumption and a list of your questions and start from there.
Best wishes, Debbie
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#6 spiriths

 
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Posted 10 December 2004 - 08:00 PM

I saw Dr. Fasano last week and I thought I gained a lot from the visit, but I also forced him to sit and answer all my questions. He did make many things clear including I am not strict enough with the gluten-free diet. I learned about the research they are going to start in the middle of next year with a pill that will allow you to be on a regular gluten diet, vaccine for relatives that are at risk for celiac, and the food labeling by the FDA that will make companies list wheat on their labels. I did come from a long distance to visit with him because I have been not feeling well for so long and I needed someone who knew about celiac. I was sick of explaining it to Doctors and their students, nurses, and etc. I am sorry that some of you had a cold experience with him and maybe he was just extremly busy those days. I understand how you feel because I have had that experience with doctors many times. He explained that celiacs should see their gastro doctors at least once a year to be tested to make sure they are on the gluten free diet. That was something else that I wasn't aware of before the visit. I am going back to see him in March and hopefully by then I will be feeling better. I have had celiac for 11 years and frankly I still am having daily problems. I wish all of the best of luck with this wonderful DIET!!
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#7 stef_the_kicking_cuty

 
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Posted 11 December 2004 - 01:25 PM

too bad there's not more 'hims'

This is probably the reason, why he only spends 10 minutes with his patients. Because, if there would be more, most celiacs wouldn't "bother" him, they would go to the other good docs. :lol:
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#8 stef_the_kicking_cuty

 
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Posted 11 December 2004 - 01:32 PM

I just read that about the research next year and the pill that allows you to go on a regular gluten diet. That's typical again. Don't go to the source of your problems, instead find a comfortable way around and eat pills, pills, pills. This isn't a real solution guys, better withdraw from gluten, than eating a pill and eat gluten regular. I'd only take this pill as an absolutely last possibility, if there's really no way out, not on a regular basis. Like, when i'm traveling to tournaments and stuff like that. But i won't sit back lazy and don't do research anymore for gluten-free restaurants in the area i'm traveling to, because there's a pill. That's not the way it should be, just my opinion here. If i find a gluten-free way to eat when at a tournament, then i don't take the pill. Easy as that. That's just a question of discipline. It's the same with the headache guys, instead of trying to find the reason, they swallow one pill after the other. And it gets worse each time...

Stef
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Stef

Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#9 mela14

 
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Posted 14 December 2004 - 05:55 PM

Just curious........who is this dr fasano? where is he located?
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#10 FreyaUSA

 
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Posted 15 December 2004 - 04:19 AM

A pill?! As an adult with celiac disease, I can see the benefits of this (but, honestly, it better take care of every microgram of gluten in my body or will I still be in danger of brain/nerve damage?!) But as a mother of three with celiac disease, I'm very scared. What are the long term side effects, if any, that this will have on a developing child? Where did you read about this pill? Ugh. More to worry about.
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#11 tom

 
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Posted 15 December 2004 - 10:41 AM

The pill they're researching at Stanford is only for gliadin and has only been tested on rats. I'm not gonna hold my breath.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#12 tom

 
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Posted 15 December 2004 - 10:44 AM

Just curious........who is this dr fasano? where is he located?

Oh and for mela14

http://www.celiaccenter.org/

He's at the U of Maryland.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#13 mela14

 
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Posted 15 December 2004 - 12:57 PM

Thanks Tom,

I checked out his website. Seemed impressive enough. Thanks!
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#14 dreamhouses

 
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Posted 15 December 2004 - 09:21 PM

Hi, just wanted to share thoughts on Dr. Fasano. I was diagnosed by him about six months ago, and shared the same experience of boring waiting room with hours of waiting (he books in blocks of time -maybe its a European thing-)....
HOWEVER the half hour he spent with me on my first visit was a godsend of clarity and understanding. I learned more, and felt more understood in that time than any other Drs office. Like he closed all those doors behind me, and showed me how to open a new one. He basically cut through years and years of misdiagnosis by arrogant doctors (I'm 48!)...was patient enough to understand my anger and feeling of upheaval and sadness, and still counsel me to leave my anger behind.
I am even more thankful for the time he and his assistant spent with my teenage daughter to counsel her and try to bring her to a point where she would be willing to be tested for Cel., after her bloodwork came back very high. This is so hard for a teen to face. She has just yesterday had an endoscopy done, and has to go on to the next stage of trying to cope. (or maybe just to try to ignore/deny it). I don't think she would feel like thanking him at this point (she's real mad/bummed out) --- but I really do know how much he gave her- he did everything he could possibly do to help her find the strength to agree to be tested. I don't think I could have done that myself.
I'm sure there are other compassionate doctors in the field, but we all know how terribly painful it is when we don't have them. Personally, when I see the amount that this one man gives, when he can, and how much he works to promote work on the research and awareness level, I feel like I should find a way to try to give a tiny fraction of what he does for this celiac cause.
Note to Gillian502: your description made me laugh!
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#15 dreamhouses

 
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Posted 16 December 2004 - 06:20 AM

Mela14....Thank you for asking about my history with discovering the celiac, and the visit to Dr. Fasano. NO ONE HAD EVER MENTIONED CELIAC DISEASE to me, despite the fact that I had suffered since my mid twenties with chronic anemia, low thyroid levels (since childhood) multiple food and chemical allergies, chronic muscle spasms and aches, and am have a small stature! I had been to so many experts of various sorts - huh! I had to figure it out myself - thanks to an article in the WASHINGTON POST about a year and a half ago about Dr FASANO. Had he not been out promoting this in such a public way I would still be in the dark, I'm sure. My profile was like a classic read on this stuff. How could all these previous drs. not bother to put two and two together. If I'm reading it in the Washington Post, surely they have access to the same information!!!
As for my daughter, who is 18 now (lactose intolerant, petite, some asthma) - she is really struggling since her endoscopy a couple days ago. She's told me she will NOT go on this diet and can't possibly do this living in a college dorm. She really does not want to be isolated socially. How scary, I can understand her fears at her age. I'm looking for any ADVICE ON HOW TO DEAL WITH COLLEGE anyone may have, so I can help her if she somehow ends up willing to try it.
By the way, I'm doing well on the new diet (four months), and know I'm on the right road. thanks
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