Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Watch What You Say


floridanative

Recommended Posts

floridanative Community Regular

Many on this board, including me, have expressed that we would never want most of our freinds and family to come on this site and read our posts, as they may not be so nice at times and could hurt the feeling of those we care for. Well something interesting just happened when I was searching online for gluten-free places to eat for an upcoming trip. My own post from here appeared about that town/visit. Now I had not said anything that would offend anyone but that is not always the case of course.

For instance, if one of your family members decdided to locate a place for you to eat while visiting with them, they could end up reading a post about how worried you are or that you're dreading the trip. Just thought I'd share what happened to me because I really was taken aback when I got a match that was a post of mine from this site. It's like we think we're just sharing with each other but of course we are sharing with the world.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



oceangirl Collaborator
Many on this board, including me, have expressed that we would never want most of our freinds and family to come on this site and read our posts, as they may not be so nice at times and could hurt the feeling of those we care for. Well something interesting just happened when I was searching online for gluten-free places to eat for an upcoming trip. My own post from here appeared about that town/visit. Now I had not said anything that would offend anyone but that is not always the case of course.

For instance, if one of your family members decdided to locate a place for you to eat while visiting with them, they could end up reading a post about how worried you are or that you're dreading the trip. Just thought I'd share what happened to me because I really was taken aback when I got a match that was a post of mine from this site. It's like we think we're just sharing with each other but of course we are sharing with the world.

Excellent point. I've always thought of the Internet as a completely public space. My kids were annoyed for years because I would not get a computer, then would not get on the internet. (We don't have television either) It's good to be reminded.

lisa

tarnalberry Community Regular

Yep. While some blogs have privacy filters, or at least filters that allow posts to not be indexed by search engines, this isn't a blog, and this doesn't have such a filter. It's always best to imagine that you're saying whatever you're saying to everyone you know now, and could meet in the future. It gives an interesting perspective on self-censorhip, I've learned the hard way.

ehrin Explorer

try googling your name, your friends names and your family members names

you'll be amazed at what you find!

CarlaB Enthusiast

Except that I have a very common name and there are thousands with it!!! Sometimes it's an advantage, usually it's a problem, like when trying to buy a house and suddenly my credit shows I owe thousands to someone ...

Carriefaith Enthusiast

That's a really good point. Anyone could read what we say here if they wanted and most of us have pictures so it's easy to tell who it is!

ms-sillyak-screwed Enthusiast

.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



schuyler Apprentice

I actually found this board by doing a search for gluten-free bread.

Thank goodness I did, because I don't know what I'd do without this board.

Guest BERNESES

I just googled my name and my hubby's and it turns out that he is deceased lead singer of Nirvana who just happens to have a cousin with my first name. Weird!!!!

Guhlia Rising Star

Thanks for the reminder... Now if only I could get a member of my family to actually do some researching on the subject!

Errrr... Becky, if you read this, I didn't mean you. :)

Idahogirl Apprentice

My mom has celiac and reads this site regularly, so that keeps me accountable. :D In fact, she is able to go to my user and read all of my posts! It makes me think about what I type a little more since I know I'm not totally anonymous!

Lisa

jenvan Collaborator

Oh, that's very true Tiffany! I had someone from my local Celiac group e-mail me that she found a post I wrote on a doctor....she was researching him. Another woman I didn't know found something I had written about a specific medication and e-mailed me b/c she just moved to my town. We had lunch together :) The internet makes it a "small world." I try to be consistent in character here online as I am in person so that I don't have to be worried about anything I write.

Rikki Tikki Explorer

I googled my first name and it took me to the page that had all the information about me. Now I am thinking I should change my sign on name for here. The problem is my name is so unusual. Any ideas?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748

    Stephanie94
    Newest Member
    Stephanie94
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.