Need Adult Celiac Gi In Boston/cambridge Ma

[NewGFMom]

So, we just had a surprise at our house.

My son (4) tested positive for celiac disease via TTG, (full ELISA was abnormal) over the summer. We immediately went gluten free and although it took a few months his tummy troubles have abated. So, with the blessing of our second GI we have decided to postpone the biopsy indefinitely. Based on his lab work and his response to the diet, the doc said he's pretty convinced my son has celiac and we can biopsy him when he's MUCH older.

I got the panel first because I thought I was the more likely culprit. I have no real symptoms per se, but my husband is such a tank (ie, he has not taken a sick day in over 5 years) that we thought it was unlikely. Plus he's a big guy and that's pretty unusual for celiacs. My labs came back negative, so I nudged him until he got his bloodwork done.

And his TTG was 11 and another one was high as well. His numbers weren't nearly as bad as my son's. But they were definitely not normal.

Whoa. So, since he's totally asymptomatic we're going to keep his diet the same until we go to see the GI. We're assuming that he'll do the biopsy because there's not reason not to at this point.

For the record, his only symptoms are: He doesn't really have a mechanism that tells him when to stop eating, and his teeth are terrible. But he has tons of energy and zero stomach problems.

Weird, eh?

So, that's the question. Anybody have a GI in Boston/Cambridge who specializes in celiac that isn't a complete jackass? My husband is a big guy and I don't want somebody who is stuck in the mode of "celiacs are emaciated, so just eat gluten until the cancer sets in..."

Thanks!

[confusedks]

NewGFMom,

I don't know of a doctor, BUT I am worried that your Dr. told you to do the biopsy on your son when he is older. That is not good advice because that means he would have to go back on gluten in order for accurate results. If he has stomach problems now, it would probably be very difficult to get him to go back on gluten. This sounds strange to me.

Kassandra

[NewGFMom]

I basically refused to do the biopsy because he was doing so good on the diet. I said, if he wants to to a gluten challenge when he's older that's my son's choice. At the point we'd 'put him back on gluten' he'd probably be a teenager and be making the choice for himself.

The doctor said based on his weight gain over the summer, the reduction of his tummy troubles and the fact that he got sick from all of our rookie gluten mistakes that he would treat him for celiac.

Does that make more sense?

[confusedks]

Yea, that makes much more sense! I get it now! Thanks for clarification.

Kassandra

[NewGFMom]

So... Anybody like their doctor in Massachusetts? Anyone, Anyone?

[Gemini]

So... Anybody like their doctor in Massachusetts? Anyone, Anyone?

I'm sorry I can't be of more help to you but I was not diagnosed by a GI. I figured it out on my own, after going almost 20 years to doctors and getting nowhere. I then requested testing from my physician,via blood work, and it turned out so high, an endoscopy was not needed.

I did try to make an appointment with a GI, initially, but they are very busy people (no surprise there) and was told it would be 3 weeks before I could be seen. I found the entire process very frustrating. I also find it hard to find doctors who aren't jackasses.

I hope you find some answers and a doctor who can help without the grief.

[happygirl]

You might contact a local celiac support group to ask them for recommendations from their members....here are some from celiac.com

Massachusetts

Boston - Support Group

Children's Hospital- GI/Nutrition Dept.

300 Longwood Ave.

Boston, MA 02115

Tel: (617) 355-2127

E-mail: celiacsupportgroup@childrens.harvard.edu

Boston - Support Group

The Healthy Villi

(Greater Boston Celiac/DH Support Group, Chapter #67 of CSA/USA)

Chairperson: Lee Graham

E-mail: randlgraham@comcast.net

Membership Chairperson: Catherine Mirick

Tel: 888-4- CELIAC

Internet: Open Original Shared Link

Cape Cod - Support Group

Contact 1: Diane Bertrand

Cape Cod Support Group

PO Box 1114

North Falmouth, MA 02556

E-mail: DMBertrand@adelphia.net

Contact 2: Margo Finnell RD, MPH, LDN

E-mail: Margo820@juno.com

Fall River - Support Group

Contact: Kathy Thiboutot

Southeast New England (including Cape Cod ) Celiac Support Group

Tel: (401) 624-8888.

Lowell - Resource:

Contact: Katherine C. Merrill

45 Tolman Ave.

Lowell, MA 01854

Tel: (978) 454-2822

[kkcambridge]

Hi--Not sure if you've found a doctor yet or not, but Ciaran Kelly at Beth Israel is probably the best local specialist in Celiac (at least for adults.)

Hope this helps!

So, we just had a surprise at our house.

My son (4) tested positive for celiac disease via TTG, (full ELISA was abnormal) over the summer. We immediately went gluten free and although it took a few months his tummy troubles have abated. So, with the blessing of our second GI we have decided to postpone the biopsy indefinitely. Based on his lab work and his response to the diet, the doc said he's pretty convinced my son has celiac and we can biopsy him when he's MUCH older.

I got the panel first because I thought I was the more likely culprit. I have no real symptoms per se, but my husband is such a tank (ie, he has not taken a sick day in over 5 years) that we thought it was unlikely. Plus he's a big guy and that's pretty unusual for celiacs. My labs came back negative, so I nudged him until he got his bloodwork done.

And his TTG was 11 and another one was high as well. His numbers weren't nearly as bad as my son's. But they were definitely not normal.

Whoa. So, since he's totally asymptomatic we're going to keep his diet the same until we go to see the GI. We're assuming that he'll do the biopsy because there's not reason not to at this point.

For the record, his only symptoms are: He doesn't really have a mechanism that tells him when to stop eating, and his teeth are terrible. But he has tons of energy and zero stomach problems.

Weird, eh?

So, that's the question. Anybody have a GI in Boston/Cambridge who specializes in celiac that isn't a complete jackass? My husband is a big guy and I don't want somebody who is stuck in the mode of "celiacs are emaciated, so just eat gluten until the cancer sets in..."

Thanks!

[GF931]

Hi--Not sure if you've found a doctor yet or not, but Ciaran Kelly at Beth Israel is probably the best local specialist in Celiac (at least for adults.)

Hope this helps!

This is where I go, too! I've been very pleased so far. I was just diagnosed a few months ago.

[GlutenWrangler]

If you go to the Beth Israel Celiac Center, make sure you avoid getting an appointment with Dr. Sunil Sheth. He thinks he's a God, and he told me to "get it out of my head" when discussing my illness. Get someone who actually cares about their patients. Good luck,

-Brian

[NewGFMom]

Thanks guys! We are still waiting on an appointment. We're actually going to Cambridge Hospital because that's where my husband's doctor sends his (the doctor's) mom to the gastrointerologist.

He said, I can't refer you to anybody better than who I send my mom to!

The doc is a GI, and not a celiac specialist per se, but we'll give it a shot. If this doesn't work out, we'll go to BI.

[sallyterpsichore]

I add a vote for the Open Original Shared Link. (click to see main site) My nutritionist is wonderful and she's there: Melinda Dennis.

Also, the GI who did my biopsy knew right off that I had Celiac and he seems like a trustworthy guy; very sympathetic and kind from my very limited experience with him. His name is Dr. Richard Doyle. He's also with BIDMC.

Best of luck!

Sally

[melmak5]

I have had experience with 4 GI's in Boston and none of them I would recommend. Normally I would not do this, but DO NOT GO TO Dr. Torre Morgan at Mt. Auburn Hospital.

I cannot say this with more warning.

[ashase]

I just went to see Dr. Sheth today. He is horrible. I am so upset by my visit I can't even write more but please feel free to email me and Ill be happy to share. jadlerlaw@mac.com

[runnerjen]

I see Dr. Steven Fine in Framingham and I think he's wonderful. I don't think he specialized in Celiac, but he is very knowledgable. He will call you just to see how you are doing. Open Original Shared Link

I also see Melinda Dennis, nutritionist at BIDMC. She is FANTASTIC! She is gluten-free and has DH and completely understands. She also helps run the Healthy Villi - Open Original Shared Link and teaches classes - Open Original Shared Link

[Susan E.]

I have had experience with 4 GI's in Boston and none of them I would recommend. Normally I would not do this, but DO NOT GO TO Dr. Torre Morgan at Mt. Auburn Hospital.

I cannot say this with more warning.

I was wondering if you might be able to explain more about what the problem with Dr. Morgan was. I saw her once and liked her.

Thanks

[melmak5]

My issues with Dr. Morgan were the following:

-implied that this was "all in my head" and that the solution to all of my problems was seeing a therapist

(left me a follow-up message on my voice mail that said "I just wanted to let you know about your test results, they were positive and yeah, I wanted to let you know that I didn't think you were crazy.")

-She pushed for me to take Benefiber. When I said that I was not comfortable consuming a product made from wheat (I was regurgitating food and having to run to the bathroom 8-11 times a day even AFTER being on the gluten-free diet) and was very hesitant to consume new foods. Her response was: "Well you are never going to get better if you do not try."

She did not give any rational WHY Benefiber would be a good idea or talk to me about alternatives.

-She said I wasn't loosing weight fast enough for it to be "a concern."

-I was so upset (I waited 3 months to get an apt. with her and it was to get treated in such a flip manner) that I ended up leaving her office and hysterically crying in the waiting room. She made her office staff inform me they close the office for lunch and I needed to get out.

Overall she was dismissive, condensing, rude and gave me little hope that I could live without pain.

A friend actually referred her and has had a very good working relationship. So if she works for you, great. I found another GI.

[Amy Joe]

So far I like Dr Wassef at Umass in Worcester. He did my biopsy and seems pretty kind. He has answered all my questions so far.

I go back on May 15th so I will update more on him then.

Amy Joe