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Any other parents of kids with Diabetes/Celiac?

Discussion in 'Celiac' started by Laura, Apr 5, 2006.

  1. Laura

    Laura Approved members

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    My son has been Diabetic since he was 3 (he's 8 now) and he was diagnosed with Celiac in March of this year. I would love to have other people to talk to who are dealing with both
     
  2. beamcarter

    beamcarter New Member

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    My daughter (5) was diagnosed in January with Type 1 and we are currently waiting on results from Celiac bloodwork. Will let you know!
     
  3. Victoria'sMom

    Victoria'sMom Approved members

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    Right here

    Hi,
    My daughter was diagnosed with diabetes in June 2005, hypothyroidism in September 2005 and celiac disease in March 2006.
     
  4. macandfi

    macandfi Approved members

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    Type-1 & Celiac

    My daughter is also a Tri-dx, Type-1 at 13months, Celiac at 3yrs and hyp-thyroid at 5yrs. He older sister is also dx Celiac as well.

    Cheers,

    Jenny
     
  5. Laura

    Laura Approved members

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    Wow, good to know I'm not alone here. How are you guys dealing with this? My son is having an extremely hard time. He's allergic to eggs, peanuts and fish so he's really limited. He complains of constant stomach pain. I just don't know what to do anymore. It seems like he's never just feeling "normal." Of course, we are still very new to this so hopefully we will find better foods but seriously, all the bread we have tried is HORRIBLE. :(
     
  6. macandfi

    macandfi Approved members

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    You really do have a hard road to travel. I think EnerG brand bread is gluten, milk and egg free but I could be wrong about the egg..? Then there is all the cross contamination with nuts! Ugh. We make a lot of our own foods but we are also lucky to be near a number of stores that are now carring a good number of gluten free foods. Again, I'm not sure I can help since he has some many food issues. Have you tried Googling for food allergy support sites like GFCF? I know of one friend who made lots of chicken and rice (all types/styles) for her highly allergic sons. She a times would not even go down the same street as a Chick Fil A'!

    Jenny
     
  7. Laura

    Laura Approved members

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    Did you guys all go casein free too? The doctor just told us gluten free but it seems a lot of people go casein free too. My son's been gluten free for 5 weeks and he still complains on a daily basis.
     
    Last edited: Apr 17, 2006
  8. macandfi

    macandfi Approved members

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    No, thankfully we did not need to drop dairy as well but I know of a few families that did at least for a while to help the gut heal. It can be so hard as our world is covered in gluten and dairy.. seems to be in everything!

    Cheers,

    Jenny
     
  9. khsavage

    khsavage New Member

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    1 Preschooler w/Type I & Celiac; rest of fam awaiting results

    Hello everyone,

    My son was diagnosed (at age 3) with Type I 6 months ago, and with Celiac this week. My husband, 14 month-old, and I were all screened this week, and we're all awaiting our results. I'm fairly certain my husband and toddler will both come back positive.

    I wonder how many of you have gone "totally" gluten-free, as in making your household (more accurately, kitchen) gluten-free? I am weighing this now...

    Kind regards to all, Kim
     
  10. macandfi

    macandfi Approved members

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    We did. I think for some it is a very hard choice, for us it really was not. We already liked to cook and didn't eat to much in the way of packaged foods. When we go to the regular food store we pretty much just go around the outer ring. If you like to try new foods and experiment there is a good bit you do with a GF diet (lots of Thai, Mexican, etc). I still laugh that after Fi and Mac were dx I was in my kitchen sucking up every crumb I could find, oven, toaster, shelves and all.:p
     
  11. Laura

    Laura Approved members

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    It's pretty easy to go gluten free since most companies list what is gluten free on their sites. The main problem for me was that I spent a lot of my free time baking and decorating cakes. I know I can still do that gluten free too but it's just not the same and it's quite a bit more expensive.
    There are also restaurants that have gluten free menus, I know Outback does.
     
  12. darcyann3

    darcyann3 Approved members

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    Going Gluten free

    Hello,

    Well my son Trevor who is 7 now dx with type 1 at 16mts old then dx with celiac June 2005 and soon to be dx with Aspergers also. Trevor younger brother in Feb. 2005 became very, very sick and it took about a month and a half for them to figure out Trace had celiac. Well after reading up on that and seeing things that stated people with diabetes sometimes also have celiac in May at Trevor's endo appt. I mentioned it to the dr. and they ran the blood test and sure enough it came back positive. In my opinion Trevor more than likely had celiac also at the time he was dx with diabetes but never had any of the severe symptoms as Trace did. I had myself and my older two also tested. Mine came back extremely positive and the older two negative. Husband wasn't tested as I am sure he didn't have it. So we decided since I was the one cooking and three out of the six in the family had to be gluten free that we all would be for the most part. We do buy cereal for the older two that Trevor would never want.....he's a very picky eater. Plus the kids buy lunch at school to make my life easier and they also are allowed to eat anything when they are at a friends house or school. Husband does as well since he travels quite a bit.

    You definately have to read all labels as things you wouldn't think would have gluten actually do. I know some grocery stores, Hyvee especially has a list on their website that lists all of their store brands that are gluten free which is really helpful. We have tried Energ-E bread and also Pamela's bread mixes. Both of which are really good. I like Pamela's bread mixes better. Most gluten free bread is also better if you toast it first. Organic type stores usually carry quite a bit of gluten free foods and at the customer service desk, ask for a gluten free product list. We go to Whole foods and Wild Oats here in the Kansas City area. I also know there is one on the west coast called somethink like Joes.

    As far as the whole milk issue, Trace started getting better as soon as we put him on a gf diet but was still vomiting three days into it. We talked to a mom who was in charge of a support group and she said a lot of times the villi in the intestines are too damaged from the gluten to break down the lactose in milk. So we immediately put him on lactose free milk and he stopped vomiting completely. Hard cheeses and yogurt are fine as the enzymes have already broken down the lactose. We had Trace on that for about 9mts and now he can have regular milk as the villi have healed themselves. I know for myself I try not to drink any milk and definately have to stay away from ice cream. Ice cream seems to really upset my stomach. I can eat sherbert though.

    Some good websites though are www.celiac.com www.glutensolutions.com. I also belong to a couple yahoo groups for celiac's or parent's of kids, sillyaks is one that is a good group with loads of info. I hope all of this has helped even though you posted awhile ago. Hope all is going well.

    Darcy dx celiac 6/05
    Trevor dx type 1 11/00, dx celiac 6/05, soon dx Aspergers
    Trace dx celiac 3/05
     

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