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I’m the parent of a nearly 15 year old daughter. 5 years ago we finally found something that made a difference in her pain. A natural doctor did a blood test showing her to be severely gluten intolerant. Regretfully, we did not know to test her for celiac before removing gluten from her diet. Without that diagnosis, many doctors have made us feel gluten intolerance isn’t that serious. Very long story. Anyway, after 5 years of strict gluten avoidance, we were on vacation and let our guard down. Served what we thought was rice, she ate a portion. It ended up being ORZO. Pasta that looks like rice. That night she was dizzy, faint, even developed a fever. She slept most of the next day not eating much at all thinking she was coming down with a cold. Then, severe stomach pain and headache. Then, she threw up everything she ate for a few days. Ready to take her to the ER, we realized it was gluten! Picked up some digestive enzymes, anti-nausea medications, ginger, peppermint, tea, you name it. Today was the first day she could eat proper in a week. Still having some discomfort. Joint pain starting now too. My main question is: Is this typical for just gluten intolerance or does it sound more like celiac? She has been severely vitamin d deficient taking as much as 10,000 iu a day in liquid D and never bringing her levels to normal and menstral cycle never regular although she started at 10. Goes for months without and then when it does come, crazy heavy lasting weeks. Doctor still wasn’t horribly concerned. Just exhausted trying to be our own doctor. Insurance constantly changing making us look for new doctors. I wish I was rich. So expensive and frustrating having to try to get enough bedside time with each new doctor to reexplain her whole journey.  Any information appreciated. She was doing much better by strictly avoiding gluten all these years but this last episode has me researching again to do what I can. Again, what do you think? My gut says “Celiac” but I guess we might not ever know for sure. 

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IT does sound like celiac but she would have to go through a gluten challenge to test this....and from what you said this seems impossible. 12 weeks for the blood test but only 2 weeks required to test with endoscope and biopsy.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
Without a offical diagnosis on paper doctors will not take it seriously nor can you get on a school plan for support unfortunately you fell into that whole that many have...YOU MIGHT consider seeing if a doctor will give her a diagnosis based on symptoms in office after a monitored ingestion of gluten, doubtful but possible.

Might consider a supplement for B-vitamins, Magnesium, Iron and vitamin C as well.

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Thank you very much. Yeah, she pretty much said she’d rather die first than eat gluten on purpose. We are talking maybe 1/3 cup of ORZO after 5 years strict gluten free. It was a violent reaction in my opinion. My insurance hardly covers anything and you have to get a doctor that’s is willing to really listen. Weighing my options. 

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I am sorry that you and your daughter are struggling with this. It certainly sounds like celiac disease.  Summer would be the time to do a challenge.  I am not sure one glutening would be enough to generate antibodies that would circulate in the bloodstream.  Everyone is so different, but it might be worth trying.  You could order the screening TTG IgA test yourself for less than $100 (depending on your state’s laws, etc.).  If positive, then get to a doctor and have insurance run a full panel and an endoscopy.  But it would be a crap shoot.  Maybe even trying a shortened challenge.  

My hubby has been gluten-free for 17 years (long before my diagnosis).    He manages without a formal diagnosis.  I would say a formal diagnosis would be necessary if she is going to board at university in the next few years.  Otherwise, she can just stay gluten free.  

Testing now is your best shot.  Summer.  No school pressure.  Later, with work commitments, it is hard to test.  It is the main reason my hubby has not been tested.  We need for him to be able to function and work.   We like paying our bills!  ?

I hope you find the best path for you both!  

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