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Support Groups
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3 posts in this topic

Is there any support groups in Kansas or any moms just wanting to talk that might know and be able to help us through this trying time.

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hi!! I'm from Kansas also, live in Emporia and go to ESU. Where are you at?? There are a few groups one in topeka, one in wichita, and one up in KC. So depending on where you are, they can be quite a drive. Let me know where you are at!!

-Jessica :rolleyes:

Kansas

Hays - Resource:

Contact: Debbie Williams

1005 West 28th, #112

Hays, KS 67601

Tel: (913) 625-9114

E-mail: williams@dailynews.net

Hutchinson - Resource:

Contact: Faye Sallee

2509 Lundman Drive

Hutchinson, KS 67502

Tel: (316) 662-6738

E-mail: sallee@southwind.net

Kansas City - Support Group

Contact 1: Helen Richards

Greater Kansas City Celiacs (CSA)

6317 Goodman Drive

Merriam, KS 66202

Tel: (913) 236-9454

E-mail: richgary@swbell.net

Contact 2: Karen & Roger Miller

11714 Hadley

Overland Park, KS 66210

Kansas City - Resource:

Contact: Danelle Sorensen

Olathe, KS

Tel: (913) 397-9284

E-mail: homesweethome@despammed.com

Leavenworth - Resource:

Contact: Latisha May Thomas

1313 Vilas

Leavenworth, KS 66048

Tel: (913) 682-6678

Manhattan - Support Group

Contact: Rene' Eichem

Manhattan Celiac Support Group

2442 Buttonwood Drive

Manhattan, KS 66502

Tel: (913) 776-6013

E-mail: arened@ksu.edu

Contact 2: Mary Jordan

2513 Nutmeg

Manhattan, KS 66502

Tel: (913) 539-2963

E-mail: MJordan672@aol.com

Topeka - Support Group

Contact: Sharon Larson, President

Topeka Celiac Sprue Support Group (CSA)

4310 SE McMahan Ct.

Tecumseh, KS 66542

Tel: (785) 379-0479

E-mail: slars5@cox.net

Wichita - Support Group

Contact 1: Kay Finn

Wichita Celiacs (CSA)

805 N. Cypress

Wichita, KS 67206

Tel: (316) 686-7034

Contact 2: Marty Weeks

8108 Mockingbird

Wichita, KS 67207

Tel: (316) 684-4017

E -mail: weeks@southwind.net

Contact 3: Faye Sallee

E-mail: sallee@southwind.net

Internet: http://www2.southwind.net/~weeks/celiac/

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I'm sitting here in southeast Kansas, near Pittsburg. I am a mom, too! I'd be happy to talk to you about this! You can post here on the board, send me a private message, or email me.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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