Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

JamiD

University Celiac Clinics

Recommended Posts


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


My experience w/ an alleged Celiac expert at Stanford was horrible. Was probably 3 yrs ago and still makes my blood boil if I think about it too much. (So I won't write much)

It became obvious he was far more interested in getting another research subject than in actually helping me.

Share this post


Link to post
Share on other sites

Well, I've got an appt at Stanford in Aug. I'm discouraged by Murph's experience, but I can't afford the tests from a Naturopath right now and my insurance will cover a visit to the Stanford clinic.

In the meantime, I will remain on a lectin-free diet.

Share this post


Link to post
Share on other sites

I saw Dr. Allesio (sp?) at the University of Maryland Celiac Clinic and had a favorable experience although I really just wanted to know whether I should be tested. I've been on the gluten-free diet for about 5 years and, aside from an occasional "glutening" by someone else, I've had a good response. Before that I was extremely sick for about 6 years and had occasional bouts for many years before that. I also had questions about whether my children should be tested (now that they are starting to have children of their own). Although Dr. A. had an intern see me initially (and we spent 30-or so minutes together), he was pretty quickly in and out of the room. But it felt wonderful to be with someone who was SO knowledgeable about celiac, had great humor and warmth, had a very pragmatic approach and left the door open (so to speak) to further visits, questions, etc.

It was worth the hassle of traveling so far and waiting so long . . .

Sue


Self-diagnosed in 2004 after 6 years of hell. Doing well on gluten-free diet, but still having occasional bouts of accidental glutening. Message board has been a godsend. Have been on since 2004 as "grannynanny," but couldn't recreate password and was shut out, having to re-register in 2007. Update: Gastroenterologist wanted to do genetic test for celiac (Mar 2008). Results showed genetic marker on G8 -- one of two genes identified as Celiac.

Share this post


Link to post
Share on other sites

I've been seeing Dr. Green at Columbia-Presbyterian's celiac center for about two years, and I'd say I've had a fairly positive experience. My only complaint is that it's difficult to get him to call you back (if you need test results explained or something like that.)

Share this post


Link to post
Share on other sites
I saw Dr. Allesio (sp?) at the University of Maryland Celiac Clinic and had a favorable experience although I really just wanted to know whether I should be tested. I've been on the gluten-free diet for about 5 years and, aside from an occasional "glutening" by someone else, I've had a good response. Before that I was extremely sick for about 6 years and had occasional bouts for many years before that. I also had questions about whether my children should be tested (now that they are starting to have children of their own). Although Dr. A. had an intern see me initially (and we spent 30-or so minutes together), he was pretty quickly in and out of the room. But it felt wonderful to be with someone who was SO knowledgeable about celiac, had great humor and warmth, had a very pragmatic approach and left the door open (so to speak) to further visits, questions, etc.

It was worth the hassle of traveling so far and waiting so long . . .

Sue

Hi Sue,

I just read your post this morning. I met Dr. Alessio Fasano last summer during a talk he gave at the University of Virginia. His talk and his personality were very impressive. What I think a lot of people don't realize is how busy a person he is. The fact that you got to see him at all is impressive. The thing that I have found since my diagnosis over two years ago is how much you or I or anyone else can learn about Celiac if they just try. Those of us with Celiac are the real experts. The average family doctor can become a so-called "expert if they just try a little. The main problem is that there is no money to be made treating this condition after the diagnosis. There is no incentive for any doctor to spend a whole lot of time talking to any of us.

The fact that you have Celiac and children is a genuine concern. That said you know that the only treatment for them is the same as you and that is the gluten-free diet. You don't need Dr. Fasano or any other doctor to tell you that. Convincing your children or anyone else to try the diet on the onset of symptoms is the hard part. Most people are scared to death of having to change their lifestyle. They will be willing to spend a lot of money on the front end trying to eliminate everything else before finally settling on the same diet as you. You think it would be the other way around. I have family members who probably won't do anything unless they develop symptoms. There is nothing wrong with that if the first thing they do is see if the diet helps them. Trying the diet is free. This makes the most sense however human nature generally dictates the other course (expensive testing) first. If it were me and I wanted to test for anything the first thing would be to see if they had either of the two genes (DQ2 or DQ8). If they have neither then that would not completely eliminate their chances but would put them in a low-risk catagory.

Sorry about the length of this reply but I hope this helps.

Tom

Share this post


Link to post
Share on other sites

My son sees Dr. Guandalini at the University of Chicago. We have nothing but great things to say about him and his staff. Every visit (including his endoscopy) have been positive experiences.

Share this post


Link to post
Share on other sites
My experience w/ an alleged Celiac expert at Stanford was horrible. Was probably 3 yrs ago and still makes my blood boil if I think about it too much. (So I won't write much)

It became obvious he was far more interested in getting another research subject than in actually helping me.

Yikes. I'm sorry to hear that, especially since all my searches for Celiac experts in the Bay Area have led me to Stanford, so far. Are there any MDs in the Bay Area that you would recommend?

Share this post


Link to post
Share on other sites

there is a recent thread on the Mayo Celiac Clinic if you look under "Doctor's". Those who went were pretty positive about it in general and Dr. Murray especially.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

Share this post


Link to post
Share on other sites
My appt at Stanford is on Aug 6th. I'll post about my experience.

Hi I saw Dr. Gray and Dr. Pyle. My experience was positive, but I am also in the medical field so I was hoping he would use me as a subject. No word yet though... Although he did talk about me without names at one of his guest talks in Sac. Well, a friend quoted him and it was exactly what he had said to me.

I felt it was a very good experience especially compared to many people on the forum whose doc's would not order the blood work for them. My firt appt. was with Dr. Gray who just diagnosis you and then has you follow up with Dr. Gayle Pyle who rechecks me every so often. Dr Gray day one ordered complete Celiac panel including HLA DQ testing, vit. deficiency...(long story but I was already diagnosed by my ------ GI after I had an ER visit. He told me and it's in path report ...sorta looks like what is seen in celiac disease. Kid you not and then he told me to buy the book "The gluten-free Bible" and see a RD!! That is it!!!) Dr. Gray ordered my actual slides and read them himself. He said my vili were 3+ and 4 is worst per him. They give you their cards to email them with any questions but I never heard back from either. I called and I was able to speak to Dr. Pyle.

The negative is I have lots of neuro issues and per my friend who went to the Sac meeting he knew very little about neuro stuff, which is what I expected b/c at my 1st appt. he did not acknowledge my neuro complaints. THEN I saw Dr. Pyle and brought up my neuro and she said she is a GI and cannot comment on neuro but that she has pt's with neuro symptoms and they seem to be having success through the Mayo clinic.

I have been to 5 neuro's and not one had an answer. One in Sac, Davis, Stanford - the 2nd worst, and the last 2 guys from UCSF!!! #5 said "You'll get better." That'e it!!!! So another doc who thinks neuro symptoms and celiac disease don't exist thus diagnosis pt. must be NUTS!!

I hope all goes well!

Take care,

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

Share this post


Link to post
Share on other sites

I saw Dr Gray yesterday.

Because my antibodies (positve IgA and EMA, but negative transglutinamase) and biopsy (negative) were done 6 mos post gluten restriction, he wanted me to do a gluten challenge and re do the biopsy. Well, being in the middle of a divorce and going back to work, I just can't fit that in.

He did order the gene tests, but said that even if they were positive, it wasn't a definitive diagnosis. And his focus is on getting a confirmed diagnosis.

My focus is on wellness and since everything lethal seems to have been ruled out, I'm sticking with what's working, that being my diet.

I'm disappointed that he couldn't help me connect the dots with diet and its effects on me, but with the help of this board, I'm chipping away at it myself.

Share this post


Link to post
Share on other sites