This topic contains 9 replies, has 9 voices, and was last updated by  james 2 years, 2 months ago.

A moms job

  • mommy2jade

    Keeping her own labeled peanut butter and butter jar for her, packing safe snacks everywhere we go, picking specific places to eat when she is with me, eating before we go to party’s if necessary, sending food with her to friends houses, informing her friends parents when necessary, making sure there are alternatives even if I need to supply it at school so she doesn’t feel left out. These are things I do to keep my little girl safe everyday.

  • Eleshia

    I do the same thing. 504 plans for school and spending hours researching everything from food to soap to make sure she doesn’t get poisoned.

    • gilmoredebbiej

      Can you tell me what a 504 plan looks like/entails? My son has an IEP so he can’t have a 504, so they never have any ndetails for GF. Thanks

      • mommabeans

        Hi, you do not need to have a 504 plan if your son is on an IEP. All you have to do is ask for a team meeting and tell them that you want to add his dietary needs to his IEP. By law you are allowed to call a team meeting. If you have to put it in writing do so. You, by law (at least in Massachusetts), must get your meeting in 60 days. Usually it only takes a week or two. I have been to hell and back with IEP’s so I do know the law on this. An IEP is set when your child has 3 or more issues. Not all have to be learning disabilities. If I can help in any other way don’t hesitate to ask.

        • This reply was modified 3 years, 8 months ago by  mommabeans.

  • AndreaNYC

    Yes, certainly I can relate. My 4 year old daughter always says God and doctors “cured” her. I smile along with her while thinking it was actually Mommy who cured you through my extreme diligence to the GF life. :)

  • jac222382

    Hi my daughter is 16 and been two years fully gluten free, she is still unwell, she can’t go out to socialise as she keeps being sick, headaches, stomach cramps and generally aches all over, we are at our wits end. She’s currently attending college and is having a lot of time off, I’m so worried how she will ever be able to hold down a job or have a normal life, we are just banging our heads in a brick wall, she has had 4 endoscopes ,biopsies, been to and consultants, we just don’t know what to do she is constantly, sick, dizzy, tired, very pale and losing weight

    • momto11

      Do you have her Ttg levels tested every 6 months? We did this for awhile with our 3 girls so we could tell how well we were keeping them gluten free. Only one of my daughter’s really looked sick. Our Ped GI had her thyroid tested, but it was normal. He suggested to me that she could have an eating disorder. I just could not believe that, so I couldn’t see it. We thought she was so thin because of the celiac—so we started pushing calories–adding extra butter, etc. She had already been restricting, but when we pushed calories, she figured out how to throw up. I really hope it is nothing like this–but I thought I would throw it out there to consider. My daughter went into the hospital at 67 lbs a month before she turned 15. Our Ped GI dais some kids will eat gluten on purpose to lose weight. I hate to give you one more thing to worry about, but wanted you to be aware of the possibility. My daughter’s identical twin sister, who also has celiac, also eventually ended up with an eating disorder. Do her biopsies show that she is healing? Have you had food allergy testing done? What about checking for other autoimmune diseases, since they like to come hand in hand sometimes? Have you tried avoiding dairy? sometimes if their intestines have not healed yet, they will be lactose intolerant until everything heals. I am just trying to throw out any possibility I can think of.

    • Lyn

      I realize that it’s been over a year since you posted, but just in case your daughter is still having trouble or perhaps this could be helpful to someone else…….

      After a Celiac diagnosis (biopsy), our daughter immediately began a full out gluten free diet. It helped, but she was still having problems with brain fog, hair falling out, not sleeping well, memory issues, bloating and lack of energy. Her doctor put her on a Low FODMAP diet in addition to the GF diet. This helped her tremendously. However, she has found, over time, that she can’t eat everything on the Low FODMAP list. Her diet is very, very limited, but she feels a lot better and performs better at work as well.

  • momto11

    I had totally forgotten about having double jars of everything we stuck a knife into!! peanut butter, jam, miracle whip, mayo. I took my kitchen apart and vacuumed out every nook and cranny to get every speck of gluten cleaned up. I bought a new grain mill so I could grind some of my own flour. I cleaned every nook and cranny of my bread machine so it was safe to use. We had to remember to wipe the counters, not share cutting boards and cutting knives. It became easier just to cook all family meals gluten free. I sent a bag of treats to school with my 5th grader so that when other kids brought treats, she could have something if she couldn’t eat what they brought. We were really lucky that her teacher had a relative with celiac, so she knew all about it. Her 6th grade teacher also had a niece with celiac. So many places have gluten free menus now that it makes it much easier.

  • james

    Eating gluten free is quite difficult, I understand. As a mom it may be a daunting task to monitor all the food that your daughter is eating. You mentioned that you must bring separate snacks/meals for her to school. In addition, you must prepare meals that are specifically gluten free in order to meet her nutritional needs. I think that a custom-made cuisine plan that includes a nutritionist may be a smart move for your family. Not only would it make your life more convenient, but also would save time that could be spent otherwise.

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