To test or not to test?


Backstory time. My daughter used to be constantly sick. I’m talking sick every 4-6 weeks like clockwork with respiratory illnesses. This started at 8 months of age. She’s now 6 years old. She underwent a TON of various tests. One blood test revealed her IGG1 levels were crazy low.
Around 3 I noticed some stomach issues. Alternating between constipation & diarrhea. Again, she underwent more testing. Wanna talk about how fun it is to collect a stool sample from a child? Ugh.
Further testing revealed her iron levels were dangerously low.
When she was diagnosed with autism I did all the research one does with this diagnosis & discovered a gluten free diet may benefit her. I researched for months before presenting the idea to her doctors. None of them thought it would help and that I’d probably just be wasting my money. Well, they were wrong. After starting the gluten free diet, her immune system is where it should have been all along, her stomach is no longer a big issue, & her iron levels have rebounded. Her doctors all later admitted that it was clear she was benefitting from this change.
The real question is, is it worth it to test to get a formal diagnosis after being gluten free for a year & a half? I’m confident that the endoscopy will confirm celiac. I’m hoping a celiac diagnosis will force her school & our family to take the gluten free thing more seriously but I’m hesitant to put her through more anesthesia.

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Alexandra 4 years 5 Answers 550 views 0

Answers ( 5 )

  1. She would have to eat gluten again for at least several weeks, I think?

  2. I don’t know why the HELL Docs that treat those on the spectrum still insists it doesn’t help when the gut is so important to Autism. It is infuriating. I am a psychotherapist and help lots of parents of those on the spectrum. I don’t know of ANY that switch to a GF diet that has not seen improvement. I encourage them all to write letters to their Docs and tell them of the differences they see.

  3. Celiac panel in blood

  4. My doctor said no it’s not worth it as long as you are willing to stick to a strict gluten free diet

  5. Gene test first? Scoping wouldn’t be my concern, my daughter did it no sweat. Its the 2-3 mths eating gluten that would be my worry…

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