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How much does the diagnoses matter?

Kazbo

By Kazbo
in Coping with Celiac Disease

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Kazbo Rookie
Kazbo
Posted

I have been gluten free off my own back for about 7 weeks. I had a bumpy ride to begin with and I'm now reducing lactose after some symptoms returned.  I am waiting for my gastro referral to come through but in the mean time I'm finding things have improved significantly since I changed my diet. 

I am wondering how many of you NEEDED the diagnosis of celiac or if your self diagnosed and have been happy with that. Or maybe you just say Non celiac gluten sensitivity and  that's enough for you.  

I am really not sure which mine is but I feel confident now that it's one of the above. I'm not sure I want to face to gluten challenge for a diagnosis where celiac may or may not be discovered but is knowing for sure helpful?

I also worry that NCGS might not be taken seriously,  although I am sure for those suffering it is very serious indeed!  

I'm interested in others thoughts and experiences to help me make a choice or to feel that NCGS matters too! 

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captaincrab55 Collaborator
captaincrab55
Posted

Hi Kazbo,  I had an Apprentice that was self diagnosed with Celiac.  I couldn't convince him to get diagnosed by a Doctor,  He did something dumb and got locked up.  They refused to feed him gluten free foods, because he wasn't diagnosed by a Doctor!

Kazbo Rookie
Kazbo
Posted
  • Author

OK, good point. I'll try and avoid prison if I don't get the diagnosis 😆😬

Beverage Proficient
Beverage
Posted

Some docs in the US are diagnosing without the endoscopy. My step granddaughter (age 19) and I were both diagnosed by different docs based on blood test, DNA test, and response to gluten free diet. If you haven't already had the Celiacs blood tests done, you would have to eat gluten again for many weeks prior.

I do have a letter from my doc saying i require a gluten free diet, but have never had any medical person require to see it, even when I was in hospital 2 years ago.

captaincrab55 Collaborator
captaincrab55
Posted
3 hours ago, Beverage said:

.

I do have a letter from my doc saying i require a gluten free diet, but have never had any medical person require to see it, even when I was in hospital 2 years ago.

I had to show that I was diagnosed with dermatitis herpetiformis in order to get my health insurance to cover gluten-free brand name drugs instead of generic drugs that weren't gluten-free!

 

 

 

drugs that weren't gluten-free

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