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"I Have Been Asked If I'm Just Being A Hipster" - Non-Coeliac Gluten Sensitivity

Updated: Jul 15, 2023

✍🏻 Written by Amy Thomson

 

Last week, we raised awareness of Coeliac disease...


This week we wanted to shed light on another condition caused by gluten consumption:


Non-Coeliac Gluten-Sensitivity

 

Story Spotlights: Non-Coeliac Gluten-Sensitivity

Amy Thompson, Non-Coeliac Gluten Sensitivity

Name: Amy Thomson


Age: 32


Diagnosis: Non-Coeliac Gluten-Sensitivity (NCGS)




 

SYMPTOMS


What symptoms did you experience before diagnosis and how long did you experience them for?


I experienced many symptoms before being diagnosed with non-coeliac gluten sensitivity (NCGS) which ranged from joint pain, headaches, lockjaw, mood swings, hair loss, chest pains, and stomach aches.


I would say I started noticing these symptoms in my early teenage years.

 

DIAGNOSIS


When were you diagnosed?


I was diagnosed around 3 years ago when I was 29.

How did you feel when you were diagnosed?


The diagnosis didn't feel like a relief (even though I thought it would).

This was because the gastroenterologist told me that they didn’t know much about NCGS at that stage and the only advice I was given but just to refrain from eating gluten.


 

POST-DIAGNOSIS


What challenges have you experienced since having coeliac disease and being gluten-free?


The challenges of being gluten free are eating out and travelling.

There is a big lack of knowledge in restaurants when it comes to gluten; a lot of staff think I can’t eat meat or dairy which is obviously not the issue. I have been asked if I can’t eat gluten because of an allergy/ intolerance or if I’m just being a “hipster”.


When travelling, I have to travel with food essentials like GF oats and bread.


For me, the biggest challenge is restaurant staff's attitudes. I feel embarrassed when requesting gluten-free food in restaurants.
 

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What is the difference between coeliac disease and non-coeliac gluten sensitivity?

Coeliac disease is an autoimmune disease where the body’s immune system attacks itself when gluten is eaten. This causes damage to the small intestine lining and prevents the body from absorbing enough nutrients from food. Coeliac disease is not a food allergy or intolerance, it is an autoimmune disease.


Non-coeliac gluten sensitivity is when symptoms similar to coeliac disease are experienced, but it is not clear how the immune system might be involved. This is because antibodies are not produced, and the small intestine lining doesn't seem to be damaged.


 

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