Reply to Nephew with celiac - what is fair/appropriate when visiting grandma?

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]From the SIL POV, if you are 4.5 hours from civilization, where is the nearest hospital?  If she is newly diagnosed, she may be worried if there is cross contamination it's far to get her two year old to a medical facility. [/quote]

gluten exposure for someone with celiac disease doesn't cause anaphylactic shock -- it isn't an allergy.  It causes damage to the gastrointestinal system and can cause symptoms such as muscle and body aches, joint pain, fatigue, bloating and gas, nausea, stomach cramps, constipation, diarrhea, rashes, headaches, depression, brain fog and irritability, which can last for a day or more like a week to get back to normal.   But you don't need to go to the hospital.[/quote]

I agree that the child won't need urgent immediate medical care like a child with an allergy.    However, my understanding is that the symptoms, particularly those of newly diagnoses patients whose intestinal damage is still healing, can last longer than a week.

The young kids I know who have been diagnosed with celiac were so sick before diagnosis that doctors were suggesting life threatening conditions like cancer or cystic fibrosis.   In addition to feeling lousy, kids with celiac stop growing and learning.   Healing this child's intestines so he doesn't miss this window for brain and body growth is a higher priority than it would be for an adult with the same diagnosis.

I should note that the reason I know a number of kids with celiac is that I'm a special ed teacher, and kids with celiac tend to be over represented in special education classrooms because the "brain fog" can seriously impact learning.  [/quote]

Lap of celiac here.  I think your perception may be biased by the subset of celiacs you are seeing.  It sounds like you are seeing the kids with the severest symptoms.  My kid had a persistent stomach ache eczema patches, and a somewhat distended belly. But absolutely no FTT (opposite really) or severe manifestations. Fairly certain she never would have been diagnosed without the new blood tests as nobody expected celiac from her constellation of symptoms, and she wasn't anywhere near sick enough to go for an endoscopy without that positive bloodwork.

Now it sounds like the 2 yo in OPs case may be on the sicker end.  But just wanted to point out that celiac has historically been way under diagnosed because so many folks have more silent or minimal symptoms.[/quote]

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