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

  • Announcements

    • admin

      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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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
      103,342
    • Total Posts
      917,393
  • Topics

  • Posts

    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined