
desirun
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desirun last won the day on March 27 2018
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squirmingitch reacted to a post in a topic: 504 Plan for daughter with Celiac
desirun reacted to a post in a topic: 504 Plan for daughter with Celiac
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504 Plan for daughter with Celiac
desirun replied to rachee220's topic in Parents, Friends and Loved Ones of Celiacs
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. desirun reacted to a comment: Cannabis and Gluten
cyclinglady reacted to a post in a topic: terrible symptoms, need feedback
ravenwoodglass reacted to a post in a topic: terrible symptoms, need feedback
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terrible symptoms, need feedback
desirun replied to Ecgmmom's topic in Parents, Friends and Loved Ones of Celiacs
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. desirun reacted to a post in a topic: 6 yr olds Iga test almost normal at 6 months? Doc is surprised.
desirun reacted to a post in a topic: 6 yr olds Iga test almost normal at 6 months? Doc is surprised.
Parker Cook reacted to a post in a topic: How many times your child go to poop a day?
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second biopsy and eating gluten
desirun replied to Becofhearts's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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. desirun reacted to a post in a topic: 7 year old and biopsy
E's mom reacted to a post in a topic: Daughter having stomach aches again, 7 months out from diagnosis
desirun reacted to a post in a topic: 23 and Me- Celiac Gene Testing
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23 and Me- Celiac Gene Testing
desirun replied to desirun's topic in Parents, Friends and Loved Ones of Celiacs
True, we could both be! TTG testing approved, genetics are not in our case. -
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?
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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?
desirun reacted to a post in a topic: Probable Celiac - What?
desirun reacted to a post in a topic: Probable Celiac - What?
desirun reacted to a post in a topic: Probable Celiac - What?
desirun reacted to a post in a topic: Probable Celiac - What?
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great post.
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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
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No follow up required??
desirun replied to Mph1213's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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! -
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.
Jmg reacted to a post in a topic: Lack of appetite after starting gluten-free diet
PhoebeC reacted to a post in a topic: Lack of appetite after starting gluten-free diet
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Celiac.
cyclinglady reacted to a post in a topic: Lack of appetite after starting gluten-free diet
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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