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Susy1986

Curious About Some Things...

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Hello everyone, my name is Susy and I am curious about a few things... I figured this would be a good place to ask.

I was asked to start a gluten free diet by a nurse I see based on the theory she thinks I may have Celiac. This came about when I was mentioning my health problems too her...

When I was a kid, I had constant nosebleeds... Almost everyday, as well as migraines.

I have had skin conditions since I was a kid as well, rosacea and dyshidrosic eczema.

I have a huge problem losing weight (doctor is convinced it's not thyroid)

A few years back, I was diagnosed with fibromyalgia and chronic fatigue syndrome which apparently appeared because of Mono.

Pain In joints and muscles because of that

I also suffer from severe generalized anxiety disorder and panic disorder.

I assumed I had IBS, my bowels ranging from ok, to constipated, to severe diarrhea.

Fowl smelling gas after eating anything with gluten in it

Stomach cramps

Severe me natural cramps

I randomly break out with rashes on my legs for no reason at all.

I still have acne at 28 years of age.

I have severe brain fog and insomnia as well as concentration issues.

The fatigue is overwhelming at times and it drives me crazy.

I have had seizures based on no reasoning at all from my doctor.

Severe heartburn

Canker sores

Swelling of hands, feet, and ankles

Bloating

Tingling and numb hands and feet

This isn't all, but it's a lot of it. My nurse believes I have an autoimmune disorder, that I have Celiac Disease. I have been gluten free for two weeks and can see a difference in the way I feel. I ate some gluten food on Memorial Day and was I'll feeling afterwards. I also, during a fibromyalgia clinical study, had a blood test come back with a high amount of antibodies but no apparent cause. I wasn't sick or had any other problems at the time. Could I have Celiac? What are your ideas? Any help would be appreciated...

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Why wouldn't a " nurse" give you the Celiac blood work before you went gluten free. She knows going gluten-free will effect the accuracy of the blood work. This seems very irresponsible of her. Not sure how she could diagnose you without any tests?

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I would get tested before going gluten-free is at all possible.  Accurate celiac tests need 8-12 weeks of gluten (1-2 slices of bread per day) with 12 weeks being best. It would be less painful for you to test now rather than reintroduce gluten into your diet for a few months after feelng better gluten-free.  Some people can't even make it through the gluten cahllenge after being gluten-free for a time because it makes them feel so horrible.

 

Best wishes and welcome to the boards.  :)

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I would suggest going back to eating a regular gluten containing diet now so that you can get the bloodwork done.

 

I am one who can never do a gluten challenge, due to the severity of my symptoms and I really wish that I would've gotten properly tested before cutting gluten to begin with.

 

It's very possible to eat a 100% gluten free diet without a DX, but I would never suggest it as a first resort. It's much better to get DX'ed while you still have the opportunity.

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