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desirun last won the day on March 27 2018

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About desirun

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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...
  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 w...
  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 hea...
  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...
  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...
  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...