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NemesisChick

A Little Nervous About All This...

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My daughter and I are both being tested for this disease. I am 42 and she is 21. We first heard of this disease last week while visiting with the GI doctor. Our labs were drawn 2 days ago and we are waiting for the results. We have our colonoscopy/endoscopy tests scheduled for next Wednesday. So far none of the labs are back except our Folate, and it's pretty low. The Chem 14 for me was fine.

Our symptoms are similar: diarrhea x many years, polyarthritis, reflux, abdominal distension, and something like cold sores often at the crease of our mouths. My daughter has had Orthostatic Hypotension since she was 14, along with this whole mess.

I know this is wierd, but if this is the answer, then it is a blessing. She is always in pain and looks so unhealthy and is on so many medications. Does anyone else out there have any experience with Orthostatic Hypotension and this disease? Because this is a symptom, MAYBE she can stop all these medications, and feel much better....

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I hadn't heard of Orthostatic Hypotension, but I just looked it up on Wikipedia and the symptoms sound very much like the same symptoms I have had with celiac disease:

Symptoms, which generally occur after sudden standing, include dizziness, lightheadedness, headache, blurred or dimmed vision (possibly to the point of momentary blindness), generalized (or extremity) numbness/tingling and fainting. They are consequences of insufficient blood pressure and cerebral perfusion (blood supply).

Though I would feel this just while sitting at my desk at work. I also have gotten cold sores at the crease of my mouth and sores on the inside of my mouth. I haven't gotten the ones on the outside though in a long time! I wish you both luck on finding out what the problem is. I know what you mean about just wanting to find the answer. It's not that you want it to be celiac, you just want to be able to feel healthy again!

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I hadn't heard of Orthostatic Hypotension, but I just looked it up on Wikipedia and the symptoms sound very much like the same symptoms I have had with celiac disease:

Symptoms, which generally occur after sudden standing, include dizziness, lightheadedness, headache, blurred or dimmed vision (possibly to the point of momentary blindness), generalized (or extremity) numbness/tingling and fainting. They are consequences of insufficient blood pressure and cerebral perfusion (blood supply).

Though I would feel this just while sitting at my desk at work. I also have gotten cold sores at the crease of my mouth and sores on the inside of my mouth. I haven't gotten the ones on the outside though in a long time! I wish you both luck on finding out what the problem is. I know what you mean about just wanting to find the answer. It's not that you want it to be celiac, you just want to be able to feel healthy again!

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I hadn't heard of Orthostatic Hypotension, but I just looked it up on Wikipedia and the symptoms sound very much like the same symptoms I have had with celiac disease:

Symptoms, which generally occur after sudden standing, include dizziness, lightheadedness, headache, blurred or dimmed vision (possibly to the point of momentary blindness), generalized (or extremity) numbness/tingling and fainting. They are consequences of insufficient blood pressure and cerebral perfusion (blood supply).

Though I would feel this just while sitting at my desk at work. I also have gotten cold sores at the crease of my mouth and sores on the inside of my mouth. I haven't gotten the ones on the outside though in a long time! I wish you both luck on finding out what the problem is. I know what you mean about just wanting to find the answer. It's not that you want it to be celiac, you just want to be able to feel healthy again!

EXACTLY!!!!!

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