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Sunday, January 16, 2011

INFORMATION FOR NEW CELIAC PATIENTS

This following information that I am writing about for new Celiac patients is mainly information that can help you in the Philadelphia Pennsylvania and surrounding areas.  This is information that I have come across when researching Celiac disease and finding where to get help.  If you live in the Philadelphia or surrounding areas there is a new Celiac Center at the Paoli Hospital.  It is run by Dr. Keith Laskin, to find  out more information about him you can go to their website at www.mainlinehealth.org, they will have a bio on him.
The telephone number to make an appointment with Dr. Keith Laskin is 610 644 6755.
This center is a Celiac & Diabetes Center .  They have two Nutritionist on staff Maryanne Martin and Kathy Chincola.
They can be reached at the following telephone number 484 565 8020 to set up an appointment with a nutritionist.

The following are some really good websites that I have come across to help you manage your condition.
www.celiaccentral.org run by Alice Bast, her telephone number is 215 325 13 06.  She is outstanding she really helped me out.  Alice Bast and her staff members really helped me out.  She took the time to listen to my questions that I had and to give me the right answers for those questions and if she was tide up at the moment when I called for more information she would direct me to one of her staff members that could help me out

www.glutenfreeworks.com run by John Libonati and Cleo Libonati.  Their telephone number is 215 591 4565.  This is another fabulous website for getting information on Celiac Disease.
 When I first started to talk to one of the owners ( John Libonati ) he also really listened to me .  He asked me a lot of questions like are do you have Diabetes?  I answered yes.  He asked me is it type 1 or type 2 Diabetes?  I answered him type 1 Diabetes.  He said to me you should have been tested for Celiac Disease when you were first diagnosed with Diabetes and every year after.  He asked me what blood work did they do to diagnose you when you were diagnosed with Celiac disease.  I told him they did a gene test and a Celiac panel.  He asked what was the result for the gene test?  I answered him that I had the two main genes for Celiac Disease DQ2 and DQ8 .  He told me that means that one gene came from my father and one gene came from my mother.  He then asked did they do any other tests?  I answered no .  He said to me you need to check your Ferritin levels ( which is your stored iron in your bones ) vitamin B and vitamin D.  the best advice I have for you is to get my Moms book.  It will help you out a lot and I will always be here for you and let all your friends know about us
The name of the book is Recognizing Celiac Disease by Cleo Libonati.  This book is a God Send to me it is a Bible on Celiac Disease it is meant for the beginner the old timer with Celiac Disease and any medical professional that has patients that have this condition. In the book it tells you every step of the way how to deal with Celiac Disease.  It talks about what autoimmune diseases are effected with this condition and what blood tests you should have done for vitamin deficiencies. On the website ( www.glutenfreeworks.com ) John Libonati also has a newsletter that you can sign up for to get all the information you will need.

I volunteer for the Greater Philadelphia Celiac Support Group.  This group has really helped me out with lots of up to date information on Celiac Disease.  They meet twice a year at the Abington Memorial Hospital..
This Celiac Support Group is run by Karen Dalyrmple and Alice Bast.  It costs 25.00 the first year when joining the Greater Philadelphia support Group and 20.00 a year there after.  You get a lot  of information for the cost to join.  You get a welcoming package that consists of a binder full of everything you will need to get started on learning how to deal with this disease and a binder you can keep going back to help  you along the way.  You get two newsletters that are sent to you  throughout the year, they will have information in the newsletter on more new products that have become gluten free.  You will also know what vendors will be at the meeting and what speaker will be at the meeting .  These Support meetings are always held on the third Friday in October and the third Friday in March.  You will always get the newsletter before the date of the meeting.  If you would like to join The Greater Philadelphia Celiac Support Group  you can do so by calling Karen Dalyrmple at 215 757 1233.

Finally at the Super Giant Store in WillowGrove PA   they have a nutritionist on staff that you can call to set up an appointment with her to have a tour of the store with all the items you can have on a gluten free diet.
Her name is Maryanne Moreland  and her telephone number is 215 784 1960.  You can reach her when calling that number by pushing option 1 then option 4.  the address to the Super Giant Store is
315 North York Road
WillowGrove PA  19090

Giant Food Store in Plymouthmeeting Pa  19462 Does not give tours of the store but they do have a young lady there that has helped me out a lot with getting products in that I would like to see in the store.
Michelle Long You can call her @ 610 941 5448 just push option 2 for Customer Service and ask to speak to Michelle Long in the gluten Free & Organics Section.  The gluten Free & organics section is in aisles 1 and 2 in the store.
The address for this store is 2450 Chemical RD
                                           Plymouthmeeting PA  l9462
                                           610 941 5448

A few more websites that came across my desk
www.csaceliacs.org


www.glutenfreehelp.info   This is run by Tina Turbin She gives reviews for new and old gluten free products
It is a really good website to see what is about to come on board for new Gluten free products

www.gluten.net

A great Comprehensive Resource Guide By Shelley Case ( Dietitian ) The Book ( Gluten-Free Diet )

It has over 2600 gluten - free specialty foods listed by company and product name
Directory of more than 190 American, Canadian and international companies
Creative ideas for meals and snacks
Recipes and baking tips
www.glutenfreediet.ca

www.celiacprincess.com

www.delightgfmagazine.com  
This is a gluten free magazine that has a lot of great information along with tips on the gluten free diet, recipes  and other resources to help  you out with learning the ins and out of this complex disease
They have a weekly newsletter that you can sign  up to get emails

www.customchoicecereal.com          I love  love this website this is a website that you make your very own gluten free cereal mixture.
You have a choice first of a cereal base which consists of
Cinnamon Granola                  Organic Corn Flakes               Natural Organic Mixture Of Flakes
Then you put in what regular or organic dried fruits you would like to put into it, then you have a choice of what nuts and grains you wold like to put into it
Any time you put something into your mixture it tells you how much calories how much fiber and how much other nutritional values are in your cereal that you are creating.  The best part I like about this  is that at the end when you have finished making you r cereal you get to name it, so it is uniquely yours that you have made.  This would also be good if yu have children with Celiac disease because they can do it as a family and it can be something that they have made together that they can be proud of to have made.

www.stonewallkitchen.com  I love this company it is a company that sells jams and other ditchen items but they did not have any gluten free items other then their jams.  Their jams are fabulous and I asked if they could make gluten free items , they had said that they are working on it an d when they do they will let me know about them.  I just received an email from them yesterday and they now have gluten free baking items such as Brownies Pancake mixes and other mixes that look out of this world.  I spoke with Stacy Burss at Stone Wall Kitchen, she said that her daughter is a Celiac so she wanted gluten free items   She has told me tha tthese mixes are really very good that you will never know that they are gluten free they taste even better then the gluten items.  their telephone number  is1-800 -207-JAMS.  If you would like to talk to someone about their gluten free items ask to speak with Stacy Burrs and she can help you .

www.glutenfreebeat.com  A great website for getting information about new products.

The Little Bakery
921 Penllyn Blue Bell Pike
Blue Bell PA  19422
Telephone Number 267 708 0984
This Bakery I love , The gluten Free Bakery Items are heavenly
The owner John Rorer does supply schools with his gluten free bakery items which is really outstanding.  He goes to Chestnuthill Academy, Germantown Academy and he just started going to the Montgomery county Community College
His website is http://www.thelittlebakeryinbluebell.com/

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