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Potential Diagnosis Without Positive Result from Endoscopy?

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I've had stomach and sleep issues my whole life. 2 years ago I began having severe heart palpitations and was sent to a Cardiologist. Everything was normal but a month later I had an allergic reaction to something I have always eaten that sent me to emergency. I was then sent to an ENT (for a globulus) and an allergist. I was told my voice box was inflamed and instructed not to eat dairy. Initially they thought my allergic reation was soy, so I stopped eating gluten, soy, and was instructed to stop eating raw fruits and veggies from my pollen allergies. After removing soy and gluten, my night terrors went away, heart palpitations went away, and I stopped sweating profusely. I was found to have D deficiency but was still having lots of joint pain and learned with further blood testing I also had corn and gluten antibodies. Removing corn ended most hives and rashes. I was sent to a GI doctor who performed an endoscopy but only found some inflammation he felt related to food allergy. Since I was gluten free and had been for 10mths there was no way to know about Celiac. I have been tested for everything from Lupus to Rheumatoid, I still react to foods. If I eat gluten now I get a rash, bloating, severe fatigue, anxiety, and have night terrors. This will carry on for a week after. I was tested for and do carry one of the Celiac genes. I was then told since Celiac is the only blip on the radar for my food sensitivities and allergies so it's likely I may have it but they can't say for sure. Ahhhhh!. How should I proceed? And thank you for any input. It's been two year a million Doctors, I just want to fix myself. Also I'm a vegetarian so this has been especially taxing.

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If you feel better off gluten, stay off gluten. I'd find a doctor who's willing to work with you on follow up tests and routine screens though. Celiac puts us at higher risk for certain cancers, osteoporosis, and other things. Just be sure you have someone on board who believes you even though you don't have an official diagnosis. 

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In order to test you for celiac disease you would have to do what's called a gluten challenge which requires eating gluten. See:

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

So bottom line ~~~ you can either do the challenge & get tested or you can go very strict gluten free. From what you wrote I would bet you are a celiac and that would mean you need to be very careful about not getting cross contaminated. 

Read this and follow all the links contained in the threads.

 

 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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