Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Can My Child Can Meet Other Celiac Kids?

Grace'smom

Recommended Posts

Grace'smom Explorer
Grace'smom
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


missy'smom Collaborator
missy'smom
Posted

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.

seezee Explorer
seezee
Posted

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.

Open Original Shared Link

T.H. Community Regular
T.H.
Posted

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.

LDJofDenver Apprentice
LDJofDenver
Posted

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.

Beth03456 Newbie
Beth03456
Posted

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.

Grace'smom Explorer
Grace'smom
Posted
  • Author

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 months later...
Isabel's Mom Newbie
Isabel's Mom
Posted

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

Grace'smom Explorer
Grace'smom
Posted
  • Author

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

Grace'smom Explorer
Grace'smom
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.