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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 Celiac.com's FREE weekly eNewsletter   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
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Celiac Specialists In Boston

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

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

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

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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.

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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

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Just wanted to add:

I knew his name sounded familiar . . .

He wrote a book with Melinda Dennis (the nutritionist I mentioned). The book is very helpful.

http://glutenfreehelp.info/autoimmune-disorders/real-life-with-celiac-disease-by-daniel-leffler-m-d-m-s-melinda-dennis-m-s-r-d-l-d-n/

Cara

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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

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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.

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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

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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.

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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.

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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.

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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.

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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

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