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Curious About Some Things...


Susy1986

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Susy1986 Newbie

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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kareng Grand Master

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?

Susy1986 Newbie

She is a nurse that my job hires to come free of charge to talk to their employees and give them free health screenings. She wasn't able to do any bloodwork of that sort. Plus, she would have to have the doctors approval first

nvsmom Community Regular

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.  :)

BlessedMommy Rising Star

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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      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
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