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Grace'smom

How Can My Child Can Meet Other Celiac Kids?

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Hi everyone

This may seem like a strange request, but we live on the South Shore of Massachusetts, and I'm trying to find other celiac kids for my recently diagnosed 6 year old daughter, Grace, to meet. The other day she told me that she doesn't like the idea of feeling "different" from everyone else, and that she is sad that she is the only one she knows with this disease. We are a family of 7, and I think its hard for her that she is the only child in the family on this diet; the only one who knows the challenges she does. Short of calling her GI doctor, and asking her to introduce Grace to another celiac child, I'm looking to find out how my little girl could meet other celiac kids. There is a summer camp in Rhode Island for celiac children, but it doesn't take kids under 7. I located a R.O.C.K. support group in Somerset, Mass; but the group's leader isn't responding to my email inquiry. There is another support group in Boston out of Children's hospital, but there isn't a monthly meeting or kid networking kind of group. If anyone has any suggestions, or lives in this area and wants to meet at a playground, please let me know! It would be wonderful for Grace to see another child who is happy and thriving with celiac. Thanks so much for any advice. Emily

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It can be challenge to hook up with another kid with the same challenge, sometimes just a similar challenge will be an encouragement though, maybe consider looking for kids with other food allergies. Even a different challenge will be educating and help them see that "we all have our challenges". There is a blind counselor at camp this week and I think it's been an interesting experience for my son to see the world through his experience. I was encouraged a couple years ago(not too long after I started gluten-free) when a peanut allergic girl in my son's class found out that I had to avoid wheat and she said "wow, that must be a hard one!" she got it!

My son(12) was thrilled a few weeks ago when another kid, two years older than him, was visiting at church and passed on the cake that was being served(I forgot the reason-not gluten-free but something else).

I try and make and bring things to church to share more often than I otherwise might, because it means alot to him to be eating, at least some of, the same stuff as everyone else and he feels some joy and pride when others enjoy the things we've prepared. I don't try and re-create baked goods much even though I used to be an avid baker. I will occasionally. I've got a banana bread recipe that the non-gluten eaters LOVE so much they don't care that it's gluten-free and I love that it can be made ahead and frozen, and we've been experimenting with fun jello/gelatin recipes. Various types of cheesecake like desserts or layered desserts with gelatin, pudding, cool whip etc. and crumb base work well. Many fruit desserts work well without needing much conversion. I look for things that need little, if any changing from the original recipe.

This summer, I've invited one of his friends over on several occasions to teach the both of them how to cook some Japanese dishes because his friend has an interest and mom asked me, so that's another way he can connect with non-gluten-free people while sharing food.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Children's Hospital Boston has a celiac support group. They have parties and picnics. Last spring they arranged potlucks for families. I don't think you have to be a patient there to join, although the GI celiac specialists are really good. They also have great resources for school.

http://www.childrenshospital.org/clinicalservices/Site2166/mainpageS2166P0.html

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Okay, this one's a bit out there, but what the heck.

Have you checked out any homeschooling groups? There is a small sub-group within homeschoolers that involve children who have food allergies/environmental issues that the school wasn't able to cope with well. Some are celiac, some have other issues, but the concept of having to be careful about food is more 'known' among the homeschooling community, at least here in the SouthWest. My daughter is in a girlscout troop with other homeschoolers, and out of the 15 girls in the class, five of them have food issues.

Also, have you checked out any healthfood stores? a lot of times they will have classes or lectures on foods and allergens, gluten free stuff, etc... We've met a couple families with gluten issues through things like that.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Do you have an area/neighborhood monthly newsletter/newspaper? Perhaps you can call them and reach out through that (either your own ad, or generate enough interest for the paper to do a brief article).

Or local vitamin and natural foods stores, for example, may be a good place to post a colorful flyer seeking parents of children with special dietary issues. This could be a good way to begin.


Diagnosed 8-8-08 (I think I'll remember that date!)

Positive blood panel

Endoscopy a little later on confirmed, via Small Intestine Biopsy

Adult son diagnosed Celiac in his late 20s

Suspect my Mother undiagnosed Celiac

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Have you looked to see if there are any yahoo groups for adults in your area? In my location, the ROCK group isn't very active, but there is a metro-area yahoo group that organizes potlucks, meetings and dinners. I think it would be beneficial for her to meet anyone, including adults, with Celiac Disease so she doesn't feel so different. Also, the most likely kids with celiac disease are going to have parents with celiac disease, so might be members of the group.

Have you asked around at school? When I started talking to my neighbors, it was amazing how many kids with allergies came out of the woodwork, and they all share similar concerns even if the food is different. Also, it turns out there is one boy in our neighborhood - a friend of friends - who has celiac disease (also diabetes). He is quite a bit older than my son, and I don't know if my preschooler really cared if he met someone with celiac disease or not, but I know I almost cried after meeting him because he seemed so very normal - it really made me feel better about my child's future.


-Beth

Mommy to Steven, age 4 - diagnosed with Celiac July 2009 at age 3 via TTG IGA and endoscope/biopsy. He's grown several inches since going gluten-free!

And to Paige, age 6 - No celiac disease, just a picky eater

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Thank you everyone for those great suggestions. I'm going to post a notice at the local health food store w/their permission, and put my email on it if another mom wants to meet. I'll keep asking around too. She could really use a friend to identify with. Many thanks. Emily

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Hi. My daughter is 10 and has celiac and we too live on the south shore. Isabel and I were just talking about starting a south shore support group so I was glad to see your posting. If you are interested in getting the girls together, even though Isabel is older, I still think it would be great to get them together. Let me know. Thanks!

Cathy

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Hi. My daughter is 10 and has celiac and we too live on the south shore. Isabel and I were just talking about starting a south shore support group so I was glad to see your posting. If you are interested in getting the girls together, even though Isabel is older, I still think it would be great to get them together. Let me know. Thanks!

Cathy

Hi Cathy,

Wow, that would be great! And yes, we'd love to come. Since that posting in June, my daughter did wind up getting introduced to another little girl - same age - and same town, who also has celiac; thanks to Children's Hospital. So that has been a blessing and the mom has been a great help to me w/ my many questions. I don't know if she'll need the group, but she may be interested in participating w/6 yrs experience w/this and for her child to meet other celiac kids too. Her little girl had also never known another child w/celiac! And she's had it for 6 yrs! So I will ask her. Let me know when and where you are thinking of meeting, you can write me an email at emily_jim@msn.com Looking forward to talking to you more. Emily

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Hi Cathy,

Wow, that would be great! And yes, we'd love to come. Since that posting in June, my daughter did wind up getting introduced to another little girl - same age - and same town, who also has celiac; thanks to Children's Hospital. So that has been a blessing and the mom has been a great help to me w/ my many questions. I don't know if she'll need the group, but she may be interested in participating w/6 yrs experience w/this and for her child to meet other celiac kids too. Her little girl had also never known another child w/celiac! And she's had it for 6 yrs! So I will ask her. Let me know when and where you are thinking of meeting, you can write me an email at emily_jim@msn.com Looking forward to talking to you more. Emily

PS - I just read your note again, and Grace would also love to meet Isabel, even tho she's 10. Grace will be 7 in two wks. She'll think of Isabel as a big kid and that will be "cool" meeting someone a little older who has this too. So if you did ever want to meet for coffee or a playground thing after school some Friday we'd love it! - E

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