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Another New Diagnosis

Becca

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Becca Newbie
Becca
Posted

My four year old son has severe allergies to penuts, treenuts, sheelfish, soy,dairy and now has been diagnosed with celiac disease. Iam lucky to have a background in clinical nutrition and have reseasrched all his allergies extensivly. What I am looking for is a support group or ideas on how to make this all easier for him. I think we as parents, and others suffering through these new diagnosis need to raise awarness of this desease. So many people tell me well it could be worse. I know that, but I have a four year old who does not understand what the heck is going on, and in laws who even though I have tried to educate them, continue to offer him cheerios and grilled cheese saying" it won't kill him". I guess I am just venting because I know a lot of you know what we are going through. If any one knows of any support groups in Massachusetts I would be greatful for the information.

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Guest jhmom
Guest jhmom
Posted

HI and welcome to the board. I know it is very frustrating to deal with family members, I recently had my husbands grandmother say to me (about my daughter that is gluten-free and wanted regular brownies at the 4th of July cookout) "well if I were her mom I would let her eat whatever she wanted" and I said "well I would if she did not double over with pain and cry 30 minutes after she ate it". I think eventually they will "get it" and if not I am sure your son will learn what causes his pain and will learn to say No to cheerios, etc. My daughter did of course she was 8 when dx but it still took her a few months to really recognize what gluten did to her.

Here is a list of support groups, I hope it is helpful to you:

Massachusetts

Boston - Support Group

Contact: Marina Keegan

Boston Area Support Group

Tel: (508) 358-2416

Boston - Support Group

Contact 1: Laura O'Donnell

Chidlren's Hospital Boston

300 Longwood Avenue

Boston, MA 02115

Tel: (617) 355-2127

E-mail: laura.odonnell@tch.harvard.edu

Boston - Support Group

The Healthy Villi

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

Chairperson: Elise Gorseth

Email: gorseth@earthlink.net

Tel: (617) 923-0172

Membership Chairperson: Marjorie Rogers

E-mail: mwrogers67@aol.com

Tel: (508) 653-5465

Cape Cod - Support Group

Contact: Jean M. Roma MSN, RN/CS

Cape Cod Support Group

PO Box 653

MA 02635

E-mail: Cotuit428@aol.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

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