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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dr. Fasano/celiac Ctr Visit
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15 posts in this topic

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

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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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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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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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Thanks Tom,

I checked out his website. Seemed impressive enough. Thanks!

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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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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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