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8 Comments

  1. 1

    Betsy in Michigan

    Re: a 504 plan: Wrightslaw.com mights have some insight; it’s searchable. Very big go-to for Special ed concerns, but of course that includes 504’s, and some kids also have health issues like allergies. An allergy site might also have tips.

    Reply
  2. 2

    Sarah

    If I’m not mistaken, Hershey’s chocolate syrup contains xanthan gum. I tend to avoid xanthan gum when I don’t know the food source that is fed to the xanthan gum bacteria. Wheat can actually be one of the food sources. I actually react to Bob’s Red Mill xanthan gum because the company feeds wheat to the bacteria that is used to produce their xanthan gum. There are some syrups that don’t contain xanthan gum, and Smucker’s has a good chocolate one. It’s their sundae syrup. Note that I do have a wheat allergy and actually don’t know whether or not I have celiac disease. Hope this helps.

    Reply
    1. 2.1

      Lori Bernardo

      I am now staying away from Chocolate and eating more fermented stuff. Love Forager project. Cashewgurt with no sugar. no xanthan gum. They use Cassava root and Carob Seed. I feel good eating it. Great for smoothies too. There is one with high carbs too vanilla flavored too sweet but I have mixed it. Fermented veggies too. I take a probiotic. I got DH rash after eating Enjoy Life Chocolate chips. It might be cross contamination or it could be from eating spiral noodles made with rice and Quinoa. My rash hurts bad and in lots of bad places. Ouch !! I am doing better on quercetin complex. I also went off benadryl for sleep after more then 10 years taking it. It was cause a lot of fatigue and brain issues. I switched to 5 HTP and L-theanine. My fatigue is hugely better. I can exercise longer without feeling like crap the next day. I am considering microdosing other stuff to help depression and social anxiety. Over all I am doing better. My husband says I should write a book too lol.
      Thanks Dude and for everyone’s tips !

      Reply
  3. 3

    Dee

    “Lillian was just elected to be a Child Ambassador for Children’s Hospital Colorado!”
    RAD!

    “if I just keep eating gluten, will I for sure get cancer? I have had so many family members die from that horrible disease that it really does scare me.”
    This is SO annoying.

    Glad I don’t have a child in school with CD to deal with, it is hard enough keeping my me safe.

    Dude, you are amazing. I can’t want to go to HI for your beer ;)

    Reply
  4. 4

    Anne from Orlando

    To the person who wrote “I sit crying,” I know your pain. So this is for you and for anyone who is new to CD or gluten sensitivity. My life changed when I began drinking Ancient Nutrition organic bone broth. There are other bone broths out there, but that’s the one I use, and it has been safe for me. Deciding to drink this was extraordinarily difficult for me to do because I am otherwise vegetarian. But once I did, it really helped. Bone broth heals the gut. Damaged guts are why newbie celiacs can’t handle a lot of other foods. I still don’t do dairy though. My advice to anyone trying to get well:
    — see a functional medicine physician (look up why) for non-GI issues because all Celiacs have non-GI issues, get
    tested for all defiencies (e.g., iron, Vitamin D, and hormonal defiencies as well).
    — get on the (gluten free) supplements your body needs, in the right amount, and the right combo
    — fill your diet with foods from the produce section. Home cooked, natural foods are best. Get a GF cookbook.
    — sauerkraut or kimchi are two great natural probiotics to help gut health
    — Read Dr. Alessio Fasano’s book Gluten Freedom
    — Don’t eat out at restaurants, or in other people’s home, bring your own food when going out with friends.
    Some still eat out. Too risky for me.
    — Have separate dip-in foods at home. Separate butter, separate peanut butter, etc.
    — Have a separate area for preparing your foods, separate toaster, etc. Don’t let your food touch gluten contaminated
    surfaces
    — READ ALL LABELS BEFORE BUYING. If I see “manufactured in a facility that also processes wheat…” I don’t buy it. If I’m
    unsure about whether it’s safe for me and I can’t find out for sure on the Internet, I don’t buy it.
    — Start keeping a list of all the foods that ARE SAFE FOR YOU, ones you personally buy. I take pictures and have them in
    a file on my phone. Then when my husband is out shopping and asks, do you need anything, I send the photo.
    — Hang in there. It’s going to get better.

    Reply
  5. 5

    Megan

    I had my son in public school for his kindergarten and first grade years. He did not have a 504 plan, but that’s because I felt he didn’t need one. He’s homeschooled now but not because of his celiac disease. Most of the schools now don’t allow food treats for birthdays but it sounds like yours still does. If I were you, I would leave a package of cookies at school with your child’s name on it so when there is a birthday treat, your child will have something to eat along with the kids. I’d also keep a snack stash just for your daughter at school so if there’s a class party or something like that, your child has something at the school and you don’t have to worry about her being excluded. My son’s teachers were always happy to do this.

    As for the hand washing thing, I’m not sure if you can ask other students to wash their hands after gluten activities, but you can always insist that your child wash hands before eating so at least you know it’s less likely she’ll get sick.

    Reply
    1. 5.1

      Stacey

      This is what I did for my daughter when she was in elementary school.

      Reply
  6. 6

    Scott Morizot

    Hmmm. The baker who doesn’t want to give up gluten should probably read my comment on your previous post. If they want to commit suicide in one of the slowest, longest, most painful ways I can imagine, keep eating gluten. Their health *will* continue to deteriorate every year of their life until they die or are so systemically and pervasively sick they might as well be dead. They also increase their risk of permanent neurological damage, ataxia, and dementia. And they increase their risk of developing another autoimmune disease. It’s not just cancer they need to worry about.

    I was always more the savory cook. I played with baking, but it was mostly main courses and sides I cooked and which my father started teaching me how to cook when I was 10. (He’s a scientist, but he did co-author a cookbook back in the 70s.) Savory dishes are much simpler to modify to be gluten free for the most part than baking. My wife, however, has always loved baking. When the younger kids and I were diagnosed, she took it as a challenge and learned how to make fantastic gluten free baked goods. My youngest daughter is definitely a baking snob, but only learned how to do it gluten free. Throughout high school, she would make birthday cakes or cupcakes of different sorts for her friends’ birthdays. Her friends loved her creations and gobbled them up. Better than most commercial products in flavor. And it also meant she could always join in the celebration without worry. And she loved baking and loved seeing friends enjoy her creations. Basically a win for everyone involved.

    And if the baker actually lets their body heal, perhaps they’ll discover the energy to develop their own gluten free recipes and adaptions.

    Reply

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