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desirun

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by desirun

  1. desirun
    I’m so sorry. I also have not heard of any such cases in the community, with family members, or coworkers who have received Moderna. Has anyone contacted Moderna? Has this been reported as a vaccine related injury? I would start contacting large university hospitals in your area to see if any are treating similar cases. If that leads to a dead end I...
  2. desirun
    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...
  3. desirun
    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 d...
  4. desirun
    My daughter dropped from TTG's of 50 to 18 in two months gluten-free. Keep up the good work!
  5. desirun
    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 wel...
  6. desirun
    Agree with above- retesting her TTG antibody levels should shed some light on the situation.
  7. desirun
    True, we could both be! TTG testing approved, genetics are not in our case.
  8. desirun
    Soccer tournament went great. Thanks for your tips and support. Excellent suggestions that helped.
  9. desirun
    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?
  10. desirun
    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?
  11. desirun
    great post.
  12. desirun
    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...
  13. desirun
    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!
  14. desirun
    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.
  15. desirun
    Celiac.
  16. desirun
    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...
  17. desirun
    If it were my child, I'd keep him off of gluten and dairy as recommended by the dietician, especially since he's not well and this is possibly celiac. It won't hurt him to be off of gluten and he may even improve, but if this is celiac disease or gluten intolerance, he will not improve on the gluten. Right now your goal is for him to be well as soon as...
  18. desirun
    Feeneyja-How old is your daughter? Mine is 13 and experienced almost the same symptoms. She was diagnosed with probable celiac 5 1/2 weeks ago. Her symptoms have been improving off of gluten. Our GI recommended we see a neurologist due to atypical symptoms. This is the first time I've come across a child with a similar presentation.
  19. desirun
    Thanks Celiac's Wifey, your response makes sense. Perhaps the gastroenterologist's insistence that she could only truly diagnose my daughter with an positive endoscopy really has me questioning things. My daughter was almost symptom free as of yesterday since we eliminated gluten on Friday, I guess that should be my answer, but yet could it be something...
  20. desirun
    I've just been informed my daughter has "probable Celiac" by our gastroenterologist. I'm frustrated that we don't have a firm diagnosis. My daughter was sick with a virus or food poisoning a month ago, and since then has had intermittent diarrhea, abdominal cramps, headaches, peripheral neuropathy, and leg weakness. Her vitamin levels, CBC, chemistries,...
  21. desirun
    Thank you! And thank you for the air hug, I need it!
  22. desirun
    Ennis-TX- Thank you! This is great information. It had to be horrible being so sick before your diagnosis. I just can't imagine. I hope you are much better now. I'm trying to figure out if I should suggest any other tests. So far she's had CBC, chemistries, thyroid, stool studies (c-diff, ova and parasites, and lactoferrin), sed rate, albumin,...
  23. desirun
  24. desirun
  25. desirun
    I could use some encouragement on accepting that my 12 year old daughter may have Celiac Disease. She has been a very healthy, athletic girl up until 3 weeks ago, with the exception of occasional headaches (maybe 1-2 a week). Three weeks ago, at the end of a long day, she suddenly became very ill with nausea, abdominal cramps, tremors, racing heart, diarrhea...
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