Support Groups Needed!

[mom of 5 celiac]

I have been looking for a support group for about 3 yrs now in the Atlanta area. I have 3 kids and

my husband and I are all celiacs. I could really use the help.

[Guest jhmom]

mom of 5 celiac:

I too live the Atlanta area, actually North and been looking for a support group. I found out from this site that there is one in Gwinnett County. Here is the link to check it out, they only meet every other month and just had a meeting this month

Open Original Shared Link

I plan on attending the next one, I really think it will help me amd my daughter.

Feel free to email me directly for support or questions

jhmom@alltel.net

[mom of 5 celiac]

THANK YOU FOR THAT INFORMATION. MAYBE I WILL SEE YOU THERE? HOW OLD

IS YOUR DAUGHTER

[Guest jhmom]

You are welcome. My daughter is 8

[mom of 5 celiac]

I have 2 daughters and one son. They are 18,19 & 21 This has been hard because the

kids don't want to stick with the gluten-free diet. They were diagnosed just 2 yrs ago and they

were teenagers driving and going out on dates and with friends so it has been hard for

me to get them to stick to it. They have said it would have been easier if they had been

diagnosed as small kids then they wouldn't really know what they were missing.

[Guest jhmom]

I can understand your children having a hard time. My daughter had a little bit of trouble at first, she would cheat while at school. Then she would come home in pain, running a fever, diarrhea and nausea. She finally discovered it was the food that she knew she was not supposed to be eating! I'm glad she put two and two together!

I also have a 15 year old. When I was diagnosed I put him on the gluten-free diet too. He was on it for about 2 months, now he's back to eating gluten (sometimes, my kitchen is 99% gluten-free) and does not seem to have a problem with it. I have decided to have him tested in a couple of months.

[mom of 5 celiac]

My 18yr old is the one with the real symptoms. She will have really bad stomach aches

and diarrhea, but she keeps on eating the wrong foods. I have really been looking up

on eating out and trying to teach her because that is where she is now. Eating out with

her friends. She is on the H.S. swim team and they go out a lot for a "carb over load" and

of course she can't eat that without problems. I am really at the angry stage right now.

and of course feeling sorry for myself. My son doesn't have any symptoms so he says

and my oldest daughter, her biopsy wasn't postitive just the blood work was. I feel so

confused. I tried to make muffins tonight and they were a flop. I also have to figure out

diets for diabetic and Weight Watchers. I am over weight and trying to lose to get my

blood sugers under control. UGH!!

I looked up the web site you gave me . It is great and I will be there ont the next meeting.

[hapi2bgf]

Hey Ladies,

I'm in Atlanta too. I'm on the southside. I tried to make it to that Support Group Meeting in the beginning of January and got so completely lost! Maybe it's just me I know it is at the Gwinnett Place Medical Center, but I never ran into it. Next time I am going to need more detailed directions. You may want to figure it out before the meeting or bring a good local map. Just a thought.

I'm looking forward to meeting more celiacs that are local and can help with the restaurants and food purchasing issues. Heck just general info about how to figure out this diet would be such a help!

I'm the only Celiac in our family (Dx 10/2003). My daughter tested "elevated" on one blood test and negative on the blood test from the specialist. So far we are treating her as negative until she shows signs of a problem. She's a terrible eater, but growing like a weed and good moods with no bowel issues.

Maybe I'll see you at the next meeting,

-Ann

[Guest jhmom]

mom of 5 celiac:

I am sorry to hear your daughter is struggling. I know it must be a huge adjustment for her, I know it was for me and my daughter. She would tend to cheat at school then pay for it later, she finally realized what was causing her pain and she knew how to fix it! She does not cheat anymore and hopefully she will not want to cheat as she gets older.

Do your children understand the severity of this disease? There is an awesome section on this beard "for teenagers only" maybe that would help them cope?

I am sorry to hear of your muffins, I too struggle with making cakes. Just keep trying and you will get the hang of it, there are a lot of people here that are excellent cooks that give helpful hints

I am glad the link was helpful and I look forward to meeting you in March. I am excited about the support group, March will be here before we know it!

[Guest jhmom]

Hi Ann:

I am sorry to hear you got lost. Were the directions wrong? I am pretty familiar with Gwinnett county but cannot for the life of me remember where the hospital is, I probably haven't been there since the 80's. I will make sure I have good directions before going. Have you thought about using Map Quest? It may give better directions, just a thought.

I am really looking forward to the support group meeting too. I think it will be a great help. I was diagnosed in Sept 2003 as was my 8 year old daughter, I think I may bring her with me, it may give her a better understanding of this disease.

How old is your daughter? It's great that she does not show any GI symptoms and hopefully she never will.

Hope to meet you there!

[mom of 5 celiac]

Hey Ann and Stacy,

Do just when is the meeting in March? I had it wrong. I know just where Gwinnett Medical

Center is. I only live about 20 mins from there. I can give you direction. It is really easy

to find. I am really excited about meeting everyone. I have felt like I have been in this

alone until now. Now that I have someone to chat with. Stacy, thanks for the tip for the

teens. I have tried to explain about the diseae but I don't think they want to hear it.

There is an article in the Women's Day/Feb issue on Celiac. It is nice to see it is

"coming out". Have yall had any problems with weight? My husband gained about 30

and I was over weight to begin with. Malnurished is not my problem. I am trying to

help him lose his 30 as well as all mine. It is hard. Talk to ya'll soon. Karen

[Guest jhmom]

HI Karen. The support group website posted that they meet the second Saturday of every other month, I'm sure it will be posted here under message board, then at the bottom of the page.

Yes, directions would be great. I don't know whether I should come HWY 20 or 75 South to 85, which would be easier?

I have heard about the Women's Day article, maybe your daughter would read it and get a better understanding of it? There is also one in Readers Digest. I have heard they are both good. Hopefully more people will catch on and people will become more aware of this disease.

In August 2002 before my diagnosis I was slightly overweight (have had 2 children ) and could not seem to lose any weight. Then I became SO very sick and lost 40 lbs in two months! I liked the weight loss just not how I lost it. Good luck to you and your husband, you can do it!

Do you and your husband have celiac disease as well as your children? WOW! I plan on having my son tested soon. When I started the gluten-free diet he started it too then after two months he missed all the normal food and since he didn't have any GI problems I let him eat normal again but he knows he will be tested soon and does not have a problem with it.

This message board is so wonderful, I don't know what I would have done without it. The people here are great and very helpful! I look forward to meeting you and Ann both!

[beejay]

Hi everyone!

I have only in recent months been diagnosed with celiac and have had mixed results remaining gluten-free. It's been very easy too stay away from the obvious sources, but I haven't had enough experience I guess at totaling understanding the hidden sources. Anyway, I'm so happy to hear of the support group in Gwinnett. Does anyone know of any other support group in the Atlanta area. I work almost every Saturday so I would love to know if there were other meetings in Atlanta. If not, I'm sure I, too, will see you all there. It would be great to talk to people who know my frustrations.

Barbara

[hapi2bgf]

Hi,

Karen, yes I had weight problems. I lost over 45 lbs no exercise and eating everything in sight. The problems is that I started loosing weight while I was pregnant. I was skin and bones and a fat belly and even the belly was not too big. I statred to show around seven months and never got huge. Luckily my daughter came out healthy and fine aside from the colic. She is three now and so far not a celiac. Now that I am gluten-free, I still weigh less than my average lifetime weight. But the weight is all fat around the middle.

Beejay, I have spent some time trying to find celiac support groups in Atlanta and so far I have only found the one in Gwinnett. It's a long drive for me, but I go to Harry's and stock up when I am up there.

Stacie, I would bring your daughter to the meeting. I am planning on bringing my daughter and my husband. I hope that we can all learn more about the disease and helpful resources.

Hope to see all of you at the next meeting. I'll be using mapqest and leaving early this time

- Ann

[Guest jhmom]

Hi Barbara:

I am not aware of any other support groups in the Atlanta area, but if I hear of one I will let you know .

It is hard to find "hidden sources" of gluten in all foods. Here lately I have been trying to stick with the foods that I know for sure are gluten-free, that is the best way I know how to handle it.

I look forward to meeting all of you, this is so exciting !!!

[mom of 5 celiac]

Hey Barbara and Stacie,

Sorry i haven't been on in a few days. My computer was down.

I am really excited about the meeting in March. It is so nice to know you have other people with you. This is the only meeting that I know about in my area. I do know they are stating one up in the Cobb area. If you want that info I can get it for you.

Stacie,I have the directions for the best way for you to go at home. I am at school now. I will get on later an tell you. I do know 75 to 85north to 316 is the very best way. I just don't know the exit # but I will let you know. then you take a right and you will see the hospital on the right. It is in the hospital.

As far a hidden gluten, I just read read and read labels all the time. It takes me about 1-2 hrs in the store. I do know that Hormel products are safe. i called the other day because I make nachos for my husband with their chili with beans and it says Modified Food Starch. I wanted to make sure of the sourse. They said it comes from Corn and all their with MFS comes from corn. I don't understand about the color like yellow #5 and red. What does that have to do with gluten.

I don't know if my kids will come with me to the meeting or not but I think my husband will. Have you heard of celiac and ADD going hand in hand. I am having

my son tested for ADD. HE is having a hard time in college. He doesn't follow the diet so that could be a problem. Better run time to get my kids on the bus. Can't wait to see ya'll. Karen

[mom of 5 celiac]

Hey Barbara and Stacie,

Sorry i haven't been on in a few days. My computer was down.

I am really excited about the meeting in March. It is so nice to know you have other people with you. This is the only meeting that I know about in my area. I do know they are stating one up in the Cobb area. If you want that info I can get it for you.

Stacie,I have the directions for the best way for you to go at home. I am at school now. I will get on later an tell you. I do know 75 to 85north to 316 is the very best way. I just don't know the exit # but I will let you know. then you take a right and you will see the hospital on the right. It is in the hospital.

As far a hidden gluten, I just read read and read labels all the time. It takes me about 1-2 hrs in the store. I do know that Hormel products are safe. i called the other day because I make nachos for my husband with their chili with beans and it says Modified Food Starch. I wanted to make sure of the sourse. They said it comes from Corn and all their with MFS comes from corn. I don't understand about the color like yellow #5 and red. What does that have to do with gluten.

I don't know if my kids will come with me to the meeting or not but I think my husband will. Have you heard of celiac and ADD going hand in hand. I am having

my son tested for ADD. HE is having a hard time in college. He doesn't follow the diet so that could be a problem. Better run time to get my kids on the bus. Can't wait to see ya'll. Karen

[mom of 5 celiac]

Sorry I am still learning how to use this thing. How do you get all the cute stuff on your profile?

[Guest jhmom]

Hi Karen, glad you are back online. Oh Cobb county would be A LOT closer to me, since I live in Cherokee. However, I don't mind driving to Gwinnett. You can send those directions directly to my email address if you want, jhmom@alltel.net

I have heard of ADD and Celiac going hand in hand. I'm sure if he was on the gluten-free diet 100% it may help him with the ADD?!?! Seems like that is what I read, my brain is a little foggy right now, if I run across the article or link I will pass it on to you.

Have a good day

[mom of 5 celiac]

Hey there Stacie and Barbara,

I am still learning how to use this thing and I don't see where I wrote you all yesterday and it isn't posted. HUMMM? Anyway, I wanted you to know Stacie that coming to the meeting you will be better off taking 75 to 85north to 316. I forgot the exit to get off but I will find out and let you know. THen you turn right and the hopital is right there on the right. I am not sure if my kids will come or not. I am sure my husband will. They are busy working .

I found out that Hormel's chili with beans in safe. It has modified food starch but I called and the source is corn. they said all their products are from corn. Do you all look for all these ingredients? What is it with food coloring? Red and Yellow.

My entire family has celiac disease and I am just really not sure. I kind of want to be retested. I don't have many symptoms with the GI just that I was very anemic.

We have all had the biopsy and come back positive. I wanted a 2nd .

ALso, I know of lady stating up a support group in the cobb area. I just found out. IF you are interested or closer for you I will get you the name and number. Can't wait to meet you guys. Karen

[Guest jhmom]

Karen:

It sounds like the hospital is very easy to find. Cobb county would be A LOT closer to me, since I live in Cherokee. However, I don't mind driving to Gwinnett. But if you can get me the info that would be great. Heck I could always attend BOTH meetings !!

I read labels too but try to stick with foods that I know are gluten-free, either from other people or gluten-free food list that I have ran across.

If you were diagnosed by positive biopsy chances are you do have celiac disease. Some people can have the disease and have GI NO symptoms. I know it doesn't seem fair but at least you don't have the discomfort of the GI symptoms!

I look forward to meeting you all!

[Kim]

Hello everyone. I am in the Atlanta area as well.

There are 2 support groups -- one in Gwinnett and one in Cobb/Marietta area.

The March meeting is March 13 and is NOT in Gwinnett. If you are interested, I can post the information when I get home.

Kim.

[Guest jhmom]

Hi Kim, nice to meet you

Yes I am interested in the Cobb meeting, that is a lot closer to me than Gwinnett. Please post the info if you don't mind, thank you.

Do you plan on attending that meeting, if so I hope to meet you.

[mom of 5 celiac]

Hey, Kim and Stacie,

I knew about the Cobb group, but I have not heard back from the dr. office

that was getting me the information as to where is was. So, yes ,please post it.

I live in Gw. but I will come there if needed. Also, I thought there was a meeting in

Gw. every other month and the first one was in Jan so March would be the next one.

I was planning on going to that one. I am in desperate need of support with all

my celicas. I haven't been on becasue I have been sick AGAIN ! so now I am feeling

better and hope to see you all soon. ALso, Stacie I will give you direct directioins to '

gw. if you still need them. I was waiting until the date was closer. But since you

are closer to Cobb, I would go there. Karen

[Kim]

Hi everyone. I hope to meet you all in person soon.

The Gwinnett meeting for March is not at its usual place -- it's actually going to be at the W Hotel Perimeter Center. Here's the information:

Saturday March 13, 2004 2:30-4:30 pm

W Hotel Perimeter Center

111 Perimeter Center West

"Celiac Explosion: Changes in Attitudes Across the Country"

Speaker: Cynthia Kupper, RD, celiac disease

Executive Director, Gluten Intolerance Group, Seattle, WA

Directions:

From South: 85 North to 400 North. Exit 5A. Right on Abernathy Road. The hotel is 2 miles on the right.

From the North: 85/75 South to 285 West. Exit 29, Ashford/Dunwoody Road. Turn right and continue 4 lights. Left onto Perimeter Center West. Hotel is on the right.

From East: 20 West to 285 North. Follow to Ashford Dunwoody Road (Exit 29). Go left at the top of the ramp and continue through 5 lights. Left onto Perimeter Center West. Hotel is on the right.

From West: 20 East to 285 North. Ashford Dunwoody Road (exit 29). Left onto Ashford Dunwoody Road and continue through 4 traffic lights. Left onto Perimeter Center West. Hotel is on the right.

For more information on the Gwinnett Meetings (in the future), email jmfierjr@aol.com

I'll get the information on the Cobb meetings and post here as well. Those meetings will only be 4 times a year (less often) and will not conflict with the Gwinnett meetings, in case you want to go to both.

Hope to meet you all soon.

Kim.