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desirun last won the day on March 27 2018

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  1. My daughter is now in high school and there isn't a 504 plan option anymore, so she is on a health plan. I'm not sure if the plans vary from state to state, but in IL 504 plans are still an option for elementary. My guess is your school isn't familiar with celiac decease and the need for a 504 plan. Ask for a note from the MD's office and continue to advocate for your daughter. This will also help pave the way for other kids with celiac disease at your school.
  2. My daughter is 13. She was diagnosed last August. She also had horrible neurological symptoms. We went to a highly recommended and regarded GI doc who was stumped by her neuro symptoms and didn’t believe they were celiac related. We finally took her to the best Celiac GI specialist in our area who understood that her systems were related to gluten and celiac disease. Don’t feel crazy, maybe it’s time to switch doctors. As for the cross contaminations, I would start packing all your own food. It sucks, there’s no other way to put it and life changes, but it does get easier and better.
  3. My daughter dropped from TTG's of 50 to 18 in two months gluten-free. Keep up the good work!
  4. To clarify, did the endoscopy come back completely clear? Maybe the results are being misread? Do you have a copy of the report? I speak from experience that even GI’s can miss Celiac Disease on an endoscopy report. I’m worried 4 weeks on gluten would be torture and too harmful to your healing body. If your wheat antibodies were high and you responded well to being gluten free ,and now are extremely symptomatic back on gluten, it seems your answer is clear.
  5. Agree with above- retesting her TTG antibody levels should shed some light on the situation.
  6. True, we could both be! TTG testing approved, genetics are not in our case.
  7. Soccer tournament went great. Thanks for your tips and support. Excellent suggestions that helped.
  8. Has anyone done this genetic test yet? My daughter has Celiac, and hoping this is an accurate/less expensive way to determine if my husband or I are the gene carriers for the rest of our family. Any thoughts/knowledge on results vs. traditional blood genetic testing?
  9. Are decorative cookie sprinkles with gluten-free ingredients but made in a facility that manufactures wheat considered safe? So many gluten-free products are also produced in a factory with wheat but test less than 20 PPM...so unsure on this one. If they are not safe, what brands are go tos?
  10. I need help, my 13 y.o. daughter is 9 weeks post diagnosis, still feeling icky, but wants to travel and play in her 3 1/2 hour away soccer tournament this weekend in Indianapolis..ugh. We'll hit the road Friday and head back Sunday afternoon. Our hotel will have a microwave and small fridge. The team has planned a meal out at Buffalo Wild Wings and other buffet type dinner/lunches. My daughter won't be able to eat from any of these places. I'm stressed about what food to pack and prepare. Should we bring gluten-free food to the restaurant/buffet meals so my daughter can sit with her tea
  11. Ditto above. Run for the hills. Find a new doctor. There is nothing more toxic than a physician treating an illness he/she is not versed in and/or making up an unfounded treatment plan! Good job following your gut, something IS way off!
  12. Agree with Cycling Lady. My friend's daughter with Celiac is chronically constipated and takes Miralax daily. My daughter was diagnosed 9 weeks ago. She initially had diarrhea 5-6 times a day. Now that she is gluten free, she has 1-3 formed BM's a day. One thing I've really learned is the symptoms vary so very much from person to person.
  13. Hi Phoebe- We're paddling up stream in the same boat. I have a 12 year old daughter who was diagnosed with celiac disease 6 weeks ago. She struggles with a lack of appetite, abdominal pain- often worse than pre-diagnosis, and increased pain after eating. The evenings are the worst! I call it the celiac witching hour. After a few bites of dinner she often starts moaning and ends up on the couch. She is TINY, 10% on the growth chart for her age, skin and bones, and has lost 3 pounds over the 4 weeks. I know how you feel, exhausted, discouraged, and terrified that trace gluten is conta
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