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Help With My Sister'S Symptoms...

js9798

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js9798 Newbie
js9798
Posted

Hi Everyone.... :)

I'm looking for some insight and information on people's symptoms from Celiac Disease. A brief history... my mom had Celiac when she was a child, and I know that it can be passed genetically. One of my sisters has been sick for many years now... and in the beginning, none of were sure what to think, we just kind of thought that was her, but it has progressed into more serious symptoms and I am trying to help come up with information and advice on how to proceed.

My sister is only 34. Three years ago, when she was at a convention, she passed out and was taken to the ER. It was then that she discovered that she had extremely high blood pressure, and the doctor thought she had had a mini stroke. She smoked at the time, but soon after, she quit, and hasn't smoked since. She followed up with her doctor in town, who basically told her she was too young to have high blood pressure, and sent her on her way.... my sister hasn't really been back to the doctor since, she says she's afraid they will think she's stupid and imagining everything.

In addition to this issue, she has suffered for many more years from severe fatigue, headaches, irritable bowel symptoms, and more recently has started to develop excruciating mouth sores. The last outbreak of the sores was the worst, and lasted for 5 days... the inside of her mouth, throat and lips were swollen. She could barely open her mouth to eat or drink or talk, she was in horrible pain.

The one good thing that came of it though was that it made her decide to go to the doctor. The doctor suspected she was experiencing some type of autoimmune disorder,a and referenced a disease called Bichets disease. It apparently affects the smaller blood vessels, which of course can cause high blood pressure and mouth sores as well. I'm not inclined to agree with her doctor, because when I researched Bichets, the first thing listed was that it primarily effected the Mediterrian and Asian populations, and rarely affected other ethnic groups.

So... I guess my question is to all of you.... 1. have any of you or your family members had high blood pressure with celiac disease? 2. Have you experienced the mouth sores? If so, does anyone have any idea how common these symptoms are?

I would appreciate any advice or information any of you are willing to give. I just want to help my sister find some relief and get an answer for all of her health problems.

My sister lives in WA. state, and I live in MN. I told her that if she felt like she wasn't getting the help she needed there, that I would take her to the Mayo hospital. I know there they would be able to figure out what's going on.

Thanks for your time and help.... :)

Jennifer

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ravenwoodglass Mentor
ravenwoodglass
Posted

First off your mom didn't outgrow celiac. It used to be thought that children would because many diagnosed in childhood will seem to be able to eat gluten again in adulthood without issues. We now know that doesn't happen but the disease can change presentation.

Your sister does sound like she is one of us. Have they tested her for celiac yet? Has she let her doctors know that her mom was a diagnosed celiac? It is advised that all first degree relatives of a diagnsoed celiac be screened even if they are symptom free. That includes you. It should be the first thing that is looked for in those of us who have family members that are celiac, not the last.

Please make sure that she has let the doctors know and that she is tested. After all the tests are done then a trial of the diet is needed as many of us will show a false negative on testing for a variety of reasons.

You found a good place for info and support ask any questions you need to and if she has access to a computer clue her into the site so she can visit and ask any questions she needs to also.

CDFAMILY Rookie
CDFAMILY
Posted

Hi Jennifer,

What a great sister you are!

High Blood Pressure

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