Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac Specialists In Boston
0

14 posts in this topic

Has anyone had any experience pro or con with Dr Daniel Leffler at BIDMC? He is the head of the department.thanks.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hoping our member "Cara in Boston" will see this. Maybe she can help. Let me see if I can get her to chime in.

0

Share this post


Link to post
Share on other sites

Thanks. I have an appointment with him in a few weeks. Hope he can helP me with all of my strange symptoms.

0

Share this post


Link to post
Share on other sites

Thanks. I have an appointment with him in a few weeks. Hope he can helP me with all of my strange symptoms.

I was supposed to go there July 16th but I cancelled. They sent me a letter informing me that they charge insurance as an outpatient hospital visit and not as a Dr office visit. with my ins, I would also have to pay a deductible and co-insurance. I cant do it, so I cancelled. good luck, my sis in law goes there and loved them.

0

Share this post


Link to post
Share on other sites

I do not have any personal experience with him as I saw another doctor. However, if you think you may have celiac disease, BIDMC is the place to be. I was very impressed with the entire clinic. Not only is the care top notch, but it is well organized. No long delays for testing, appointments are on time, etc.

They have a FANTASTIC nutritionist who works with all patients - she has celiac disease herself, so her advice is not only accurate, but also realistic and "do-able".

I was asking my son's celiac disease specialist (Childrens' Hospital Boston) for some advice for my brother in Boise . . . he is having some trouble finding a doctor who is up-to-date on celiac disease and her only comment was, "if only he lived here, I'd send him over to BIDMC with confidence".

The only weird thing is that there is a DUNKIN DONUTS cart directly outside the main door to the celiac disease clinic . . . seemed weird and unfair to walk past delicious smelling donuts every time you go to an appointment.

Other weird observation is that there are really no places around the Longwood to get gluten-free lunch. Seems like with BIDMC and Childrens having clinics specifically for celiac disease, someone would step up and open a bakery or lunch place! If I ever win the lottery, I'll open one myself.

Good luck finding answers.

Cara

0

Share this post


Link to post
Share on other sites




They were great, I.went there yesterday and I was very impressed. I waited 5 mins and was brought in and they gave me all the time I.needed to explain everyrhing.that was wrong. They believe in intolerance unlike my.other GI so believed.that could be my.problem. I was happy because my other gi merely handed me some vitamins and said good luck, its not celiac. Yea I know it.prob wasnt celiac but there is definitley something going.on with what I eat.and how my body handles it.

They took much.more.blood and made me feel at ease, told.me to fo gluten-free immediately and to call for any reason whether to talk about.any issues, questions.about gluten, anything. I reccomend going there

0

Share this post


Link to post
Share on other sites

I'll chime in on how great they are. Anyone in the area is lucky to have them. I see Dr Leffler and Melinda Dennis (the nutritionist). They're knowledgeable about the illness and very professional, caring, and helpful.

0

Share this post


Link to post
Share on other sites

Hi Cara,

I live in Boston and my primary care doc is at the BIDMC. She has been horrible to work with and told me that "gluten intolerance and celiac is a the latest fad" and that I should just have a colonoscopy as planned based on my age! I have been in terrible pain and all of my symptoms lead to gluten intolerance at the very least. Any advice on medical care?

Thanks!

I do not have any personal experience with him as I saw another doctor. However, if you think you may have celiac disease, BIDMC is the place to be. I was very impressed with the entire clinic. Not only is the care top notch, but it is well organized. No long delays for testing, appointments are on time, etc.

They have a FANTASTIC nutritionist who works with all patients - she has celiac disease herself, so her advice is not only accurate, but also realistic and "do-able".

I was asking my son's celiac disease specialist (Childrens' Hospital Boston) for some advice for my brother in Boise . . . he is having some trouble finding a doctor who is up-to-date on celiac disease and her only comment was, "if only he lived here, I'd send him over to BIDMC with confidence".

The only weird thing is that there is a DUNKIN DONUTS cart directly outside the main door to the celiac disease clinic . . . seemed weird and unfair to walk past delicious smelling donuts every time you go to an appointment.

Other weird observation is that there are really no places around the Longwood to get gluten-free lunch. Seems like with BIDMC and Childrens having clinics specifically for celiac disease, someone would step up and open a bakery or lunch place! If I ever win the lottery, I'll open one myself.

Good luck finding answers.

Cara

0

Share this post


Link to post
Share on other sites

Any experience with Dr. Susan Kelly at BIDMC? I made an appointment there, they gave me Dr. Sheth (with an appointment for Monday on Friday) who I saw a lot of bad experiences with mentioned on this forum (wonder why he's so available? ;P ) So I called back and I switched and they gave me Dr. Susan Kelly, but I have to wait a month. I would rather do that then end up with a bad experience, if I'm hauling myself all the way into Boston. The Medical Director Dr. Ciaran Kelly, is I think the one most people are referring to when they say Dr. Kelly at BIDMC, so I was wondering if anyone had any experience with Dr. Susan Kelly.

0

Share this post


Link to post
Share on other sites

Any experience with Dr. Susan Kelly at BIDMC? I made an appointment there, they gave me Dr. Sheth (with an appointment for Monday on Friday) who I saw a lot of bad experiences with mentioned on this forum (wonder why he's so available? ;P ) So I called back and I switched and they gave me Dr. Susan Kelly, but I have to wait a month. I would rather do that then end up with a bad experience, if I'm hauling myself all the way into Boston. The Medical Director Dr. Ciaran Kelly, is I think the one most people are referring to when they say Dr. Kelly at BIDMC, so I was wondering if anyone had any experience with Dr. Susan Kelly.

I saw Dr. Sheth last March and should have heeded the warnings. He was, of course, the only one available so quickly. I took it because I was feeling so terrible and wanted answers. I really didn't get any. I waited over an hour to see him, his asst did all the work and when the Dr showed up, it was for 5 min and said I most likely had IBS, but to go gluten free.

After a few weeks, lab results said my vit D was scary low(low teens) and was given prescription vit D. I've called 3 times since April to request lab results be sent to me so I can see where my other values are (still have no clue what my B's and iron were) and still have not received them. Dr. Sheth went on a month long vacation the day after my appt. So when his asst called to tell me about my low vit D, he wasn't sure what the DR wanted to do (since he wasn't even in the country!) as far as a biopsy since my celiac test was neg, but I had some low values and very high CRP and ESR rates. My phone calls were rarely returned and after going gluten free the day after my appt, I didn't want to go back on gluten after 2 months free to have a biopsy (since he was gone so long!). I'm pretty disgusted with my experience with him and his office.

Since being gluten free, I feel a ton better, but still have some issues. Thought about making an appt to see Dr. Kelly or Dr. Cheney...but not sure if it's worth it at this point.

0

Share this post


Link to post
Share on other sites

I saw Dr. Sheth last March and should have heeded the warnings. He was, of course, the only one available so quickly. I took it because I was feeling so terrible and wanted answers. I really didn't get any. I waited over an hour to see him, his asst did all the work and when the Dr showed up, it was for 5 min and said I most likely had IBS, but to go gluten free.

After a few weeks, lab results said my vit D was scary low(low teens) and was given prescription vit D. I've called 3 times since April to request lab results be sent to me so I can see where my other values are (still have no clue what my B's and iron were) and still have not received them. Dr. Sheth went on a month long vacation the day after my appt. So when his asst called to tell me about my low vit D, he wasn't sure what the DR wanted to do (since he wasn't even in the country!) as far as a biopsy since my celiac test was neg, but I had some low values and very high CRP and ESR rates. My phone calls were rarely returned and after going gluten free the day after my appt, I didn't want to go back on gluten after 2 months free to have a biopsy (since he was gone so long!). I'm pretty disgusted with my experience with him and his office.

Since being gluten free, I feel a ton better, but still have some issues. Thought about making an appt to see Dr. Kelly or Dr. Cheney...but not sure if it's worth it at this point.

Thanks so much for that feedback. I called yesterday and asked if they had any earlier openings (my appointment is the 18th) and they said only with Dr. Sheth - for this week. I think its pretty telling when a doctor is so available and yet their colleagues are booking months out...

That is what I'm dealing with too - my Vit D was 13, and that was after 2 months of daily supplements. I'm torn between just doing the diet now and waiting, but we are investigating some other possible causes too, so I think I'm going to wait since I don't want to be confused about what the problem is and what fixed it, etc.

0

Share this post


Link to post
Share on other sites

I had my appointment with Dr. Kelly last week. I was very pleased with her. She said that even if it isn't celiac there are a number of food intolerances that are not well understood yet. She ordered an endoscopy/colonscopy and an u/s as well as a bunch of blood tests, including the TTG IgA, DGP, Total IgA.

0

Share this post


Link to post
Share on other sites

Just revisiting this older thread. I too had Dr. Sheth because he was the first available. If you re-read my earlier post, the glowing recommendation is all about the clinic in general and the nutritionist.

Cara

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined