Severe Reaction to Gluten, Celiac?

[Jhew1992]

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. 

[Ennis-TX]

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.

[Jhew1992]

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. 

[cyclinglady]

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!  

[kabons]

Hi there,

This won't be helpful in terms of your questions... but I'm disappointed on behalf of your family that your naturopath didn't suggest Celiac testing before having your daughter go gluten-free. Especially since you found a link between gluten and her pain? 

[Laurie61]

I've had low vit d diagnosed and a reaction to high doses prescribed 10 yrs before dx of Celiac. Tests since, when I had anxiety showed low D again. OTC 400IU D still bothered me similar to the 50,000 IU prescribed, giving me brain fog, headache & confusion.  So, no D supplements and avoid anything that has been laced with it!  I make sure to go out in the sun. It is made from cholesterol and despite being thin, my cholesterol was high when my D was low.  One reason we had the epidemic melanomia/ skin cancer-sun problem was ergocalciferol based vit D. Now it's been changed to calcitonin extracted from sheep's wool grease. There's also  non-animal supplement avail for vegans. (I'm allergic to wool, detested lamb chops and feel like crud if I take the supplements or even drink milk. cheese, cream, other dairy no prob.)  The sheep grease version they think compatible with the sun but I don't want sheep in my vitamin d receptors, or DNA.  Since D is made from cholesterol i figure my going out in the sunshine, cures at least 2 problems at once

[GFinDC]

3 hours ago, Laurie61 said:

I've had low vit d diagnosed and a reaction to high doses prescribed 10 yrs before dx of Celiac. Tests since, when I had anxiety showed low D again. OTC 400IU D still bothered me similar to the 50,000 IU prescribed, giving me brain fog, headache & confusion.  So, no D supplements and avoid anything that has been laced with it!  I make sure to go out in the sun. It is made from cholesterol and despite being thin, my cholesterol was high when my D was low.  One reason we had the epidemic melanomia/ skin cancer-sun problem was ergocalciferol based vit D. Now it's been changed to calcitonin extracted from sheep's wool grease. There's also  non-animal supplement avail for vegans. (I'm allergic to wool, detested lamb chops and feel like crud if I take the supplements or even drink milk. cheese, cream, other dairy no prob.)  The sheep grease version they think compatible with the sun but I don't want sheep in my vitamin d receptors, or DNA.  Since D is made from cholesterol i figure my going out in the sunshine, cures at least 2 problems at once

Hi You can also get vitamin D from oily fish like salmon, mackeral, tuna, and sardines.

[knitty kitty]

Mushrooms, egg yolk, and liver are good sources of vitamin D.  So is cod liver oil supplements.

Here's a helpful page....

https://www.vitamindcouncil.org/about-vitamin-d/how-do-i-get-the-vitamin-d-my-body-needs/#.XXXBLt9Ompc

Hope this helps!

[notme]

On 6/7/2018 at 9:38 AM, Jhew1992 said:

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. 

you are going to have to fight for a diagnosis then, I guess if you are needing an 'official'  -  that would be for making a meal plan for school as they need an official diagnosis for a 504 plan.  or, if  you trust she can eat gluten free on her own and never cheat (and if your school allows kids to bring their own lunch!  you never know these days, lolz.  the kids down here still can) then just have her go gluten free and treat it as celiac.  nothing that a doctor does besides monitor her antibodies.  you can still have her bloods done and supplement accordingly.  it sure is frustrating even as an adult.  the medical industry can't make any money on a celiac diagnosis...…………….

after an e.r. visit like that, I personally wouldn't want my kid to ingest something that will make her sick for, what is it, 12 weeks?   and if, after all that, the test comes up negative even if you see her being ill and miserable?  ugh, I feel for ya.  I hate that doctors think their test is infallible.  my brother and my daughter both had tons of tests and been treated for weird symptoms - both are gluten free now and doing great.  of course, they wouldn't have even been offered a celiac explanation if I wasn't already a celiac.  auto-immune walks hand in hand with celiac, so if you have type 1 diabetes, thyroid disease, r.a., etc in your family tree, it's not far from the celiac apple.  

I hope you find your answers.  keep copies of all her records and tests.  do not discount your parent's instinct.    hope she is feeling better.