Confused by the gluten challenge?

[elliespal]

Hi all,

I received a positive blood test for coeliac around 3 weeks ago and am currently awaiting my endoscopy appointment. 

I've been trying to explain and emphasise the seriousness of coeliac and how important it will be for me to be completely gluten free after the endoscopy (assuming it is positive). One thing that keeps cropping up is the question of; if gluten is so damaging to a coeliac to the extent that upon going gluten free I would need to worry about cross contamination etc, why am I allowed to continue eating gluten for the gluten test, especially without any monitoring from my current doctor? I do understand that the gluten challenge is a necessity for the endoscopy to understand the amount of damage and to receive an accurate diagnosis, however I'm finding it difficult to emphasise how poisonous gluten is for my system when it doesn't matter how much I currently consume?

On the same note, can anyone offer advice on how best to explain coeliac disease to family and friends in a way that makes them realise that this is more than an intolerance or lifestyle choice?

Thankful for any guidance on this strange journey ahead!

 

[Ennis-TX]

This is a backward disease to dia, you have to keep eating to to show the damage....the more damage to be seen the more "oh this is bad"....the whole challenge in my opinion is to make it look as bad as can be for a positive dia....yeah stupid I know.
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Depends on how you want to explain it....I have youtube videos to explain the disease to kids ....You can can simply say gluten is like drinking bleach/eating rat poison for my intestines. Or the more normal approach "My body treats the protein which is smaller then a germ and harder to clean off the keeping a CSI tech from finding blood, like a germ. And in creating antibodies to attack it, it also attacks and damages my intestines, (some people like me it can attack their nervous system and brain, or in the skin with DH). So any tiny and your own immune system (IE this is a autoimmune disease) will turn on your own body. SO gluten is very much like a bioweapon/poison to you and needs to be kept away from anything you eat, touch, or could get into your food (airborne flour, shampoos, lotion, etc.) Perhaps have them read the newbie 101 sections?
https://www.celiac.com/forums/topic/91878-newbie-info-101/

OH they do know this is genetic and anyone of them could have...or develop it later in life. And left untreated the damage caused can lead to other diseases, cancer, lymphoma, allergies, food intolerance, and in some cases like me brain and nerve damage that leave you with life changing disabilities and quirks.