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!

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

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?

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

Kassandra

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.

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: http://www.heathyvilli.org

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

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.

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

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.

I add a vote for the Celiac Center at Beth Israel Deaconness Medical Center. (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

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.