Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: Rob and his 10-year-old daughter, who has celiac disease, as they are receiving conflicting information from their doctors.
No need for a long intro today. The email speaks for itself.
As a gauge….she would say her pain level was a “7, 8 or 9” on a scale of 1-10 prior to going gluten-free. Now, it is consistently a 3 to 6. She rarely goes a week without missing at least one day of school. She plays travel soccer and it has caused lots of issues with her ability to play.
My wife and I are just beside ourselves because we so badly want to help her, but she just doesn’t seem to be getting better. Her Pediatric GI doctor wants to reintroduce gluten into her diet in a couple of weeks to get her levels up to do a biopsy to confirm Celiac. We just don’t know how on earth we can possibly reintroduce gluten to her system. She is skin and bones right now….is constantly in tears because she is in so much pain and is just struggling to get by. We don’t think she’ll be able to make it through the day if we go this route.
The GI doc continues to say “This is just how it is”, but her pediatrician says that’s ridiculous.
We’re just at a loss and we don’t know what to do. Any insight you can offer would be greatly appreciated. It is just tearing us up to see our little girl that was once so high on life and happy at such a low point. Thank you!
Ok…I’ve got a few thoughts here and I’m hoping the community can pipe in also.
1) If she was diagnosed with celiac disease in March via a blood test and biopsy, I don’t see any reason whatsoever to do another test to confirm; especially when that means she would need to go back on gluten. It just seems bizarre to me that your pediatrician would suggest this since she already had the diagnosis.
2) Not sure if I agree with your GI when he says “This is just how it is” but I will say it can take time for her body to heal. As difficult it is to see your child suffer, it may just be a bit before she begins to feel better.
3) Make sure there is no cross-contamination going on in the house. Did you get a new toaster? Was all the old cookware, etc. run through the dishwasher? Did you get new cutting boards? Are your other children washing their hands when they come home from school? Gluten can lurk in a lot of places (dang little bugger.)
4) It’s possible she’s got some other food intolerances. Since my diagnosis, I’ve given up dairy, soy and corn. May be worth a shot to give these up, at least while her body is healing.
5) And I have to bring up one last thing but please don’t take this the wrong way. Are you sure she is not eating gluten at school? It’s tough to be disciplined at that age. And if her classmates are giving her a hard time, it may be a challenge for her not to cave to peer pressure if you know what I mean. Please be sure to check with her school and make sure all of the necessary precautions are being taken.
Best of luck to you and your family and best of health to your daughter.