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Gluten Free Girls

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Gluten Free Girls Apprentice

Myself, and our two daughters have Celiac Disease. Our girls are 13 and 7. We're one year into this wild ride and we have yet to meet anyone else with this disease. I want to start a support group of sorts, so that my girls can meet other kids with Celiac Disease and I would love to meet other parents as well. We joined the Atlanta ROCK group but we've found that they don't have frequent events. Are we the only Celiacs in the Atlanta area? We would love to meet some Celiac folks like us!


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MitziG Enthusiast

Well, I am in Iowa, mot GA, but I know my 13 yo daughter would love a celiac pen pal! Myself and my 8 yo son are also celiacs, so there is definitely common understanding! Poor hubby is gluten free by default!

KatieL1321 Rookie

I am a pretty new Celiac. I was diagnoised 8 months ago. I would love to have someone to talk to I am alittle older than your daughters I am 15 years old but I still think it would be fun to have someone to talk to :)

Katie

MaryJones2 Enthusiast

Check out the Atlanta Gluten Free Dining Club (I think that's the name) on meetup.com - they have monthly events and lots of information on where to find local products, restaurants, doctors, and gluten free events. There is also the Metro Atlanta Celiacs group which maintains lists of gluten-free friendly restaurants and knowledgeable celiac doctors among other things. They also have events as well.

melaniesilvers Rookie

We live about 45 min north of Atlanta. My son is four (not close to the ages you have) but I would love to find out where you eat and what you buy. There is also a 7 yr old girl that lives close to us that was diagnosed in April.

shauniscrazy Explorer

I am a pretty new Celiac. I was diagnoised 8 months ago. I would love to have someone to talk to I am alittle older than your daughters I am 15 years old but I still think it would be fun to have someone to talk to :)

Katie

I dont know if i am a Celiac yet or not but i am allergic to gluten and i would like to have someone to talk to so i can learn more i am 16 and live in TN.

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    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
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      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
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      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
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