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

A Good Way To Cope!


LuvMoosic4life

Recommended Posts

LuvMoosic4life Collaborator

When I first started the gluten-free diet I hated talking about it and was nervous to bring the topic up. I even sometimes would eat gluten instead of being up front about it and saying I cannot have it, i felt as though I was a burden. I was always afraid of what people thought because I usually got criticized :(

Now I really don't care anymore and have been much more up-front about it. I dont go aroud waving my hands saying "look ar me, I have celiac's!!!" but I've been trying to bring awareness to it and now I am determined to talk to as many people as possible, especially those in contact with media and advirtising, small businesses, local resturants, doctors offices, ect. I dont want people to think I am doing this just because I have celiacs, I'M NOT. I've just been seeing how many people this really effects and it frustrated me that celiacs dont get the recognition they deserve!!!!! especially when resturants can serve special diet items like atkins/south beach/vegitarian, but they cant serve one or two thing gluten-free??? I think that this should be a mandatory thing for all resturants, even if it means re-desiging and building a gluten-free preparation area in every resturant and training employees on howto prepare food.....going to far?? I THINK NOT!

I know how hard this is to go through and I really want people's lives to be easier. It really helps the coping aspect if you get into raising awareness about this disease. I find the more I talk about it to people I dont know, the better I feel, and the more I hear that someone else knows someone with it! You don't have to go around telling people you have it, but just let people know it exsists, and how serious it is. It really doesnt take much. For ex. One little simple thing I am doing is contacting my school about putting up informational flyers. In the bathroom stalls at my school they put up informational flyers about all sorts of things, mostly health realted, so I contacted them and am getting a celiac informational flyer to be put up in all the stalls ( and how ironic, someone may just walk in with horrible D or C and sit there reading the symptoms list...... :lol: )


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

I also don't mind talking about my celiac because I know it might help someone. Years before I got diagnosed someone mentioned to me that they had celiac. I googled it a the time and promptly forgot about it. When I did get sick and realized wheat was a problem after doing an elimination diet, a light bulb went off that it might be celiac. I am extremely thankful for the person who mentioned they had it to me years ago. I also like to emphasize that it's not the end of the world - give up some foods and live a happy, healthy life. That I still eat "normal" food. That nearly everything with gluten can be made gluten-free. That my life is not miserable and awful because I don't eat wheat. I've never been embarrassed to say I have celiac. It's part of who I am, it's just what I do.

JNBunnie1 Community Regular
( and how ironic, someone may just walk in with horrible D or C and sit there reading the symptoms list...... :lol: )

No, how appropriate! That's the perfect place to put celiac flyers!~

I think she's onto something.....

ang1e0251 Contributor

I'm glad you're telling people. Years ago a friend from high school told me :lol: she was celiac. I often tried to imagine how she shopped, cooked, ate out or traveled with her family. Wow!

Later we moved from AZ back to my hometown of Milford, IN, and now this friend styles my hair. I have passed on recipes & gluten-free food gifts to her. When I realized I also was celiac, I have to admit that I didn't go through the difficult mourning period some do. My friend is healthy, cheerful and happy. I never see her hold back from any experience. I kept telling myself, if she could, I could. I've tried to aspire to have the great atttitude she diplays to everyone. Someone you have told will be diagnosed someday & remember your fighting spirit!

Keep on inspiring others!

sugarsue Enthusiast
When I first started the gluten-free diet I hated talking about it and was nervous to bring the topic up. I even sometimes would eat gluten instead of being up front about it and saying I cannot have it, i felt as though I was a burden. I was always afraid of what people thought because I usually got criticized :(

Now I really don't care anymore and have been much more up-front about it. I dont go aroud waving my hands saying "look ar me, I have celiac's!!!" but I've been trying to bring awareness to it and now I am determined to talk to as many people as possible, especially those in contact with media and advirtising, small businesses, local resturants, doctors offices, ect. I dont want people to think I am doing this just because I have celiacs, I'M NOT. I've just been seeing how many people this really effects and it frustrated me that celiacs dont get the recognition they deserve!!!!! especially when resturants can serve special diet items like atkins/south beach/vegitarian, but they cant serve one or two thing gluten-free??? I think that this should be a mandatory thing for all resturants, even if it means re-desiging and building a gluten-free preparation area in every resturant and training employees on howto prepare food.....going to far?? I THINK NOT!

I know how hard this is to go through and I really want people's lives to be easier. It really helps the coping aspect if you get into raising awareness about this disease. I find the more I talk about it to people I dont know, the better I feel, and the more I hear that someone else knows someone with it! You don't have to go around telling people you have it, but just let people know it exsists, and how serious it is. It really doesnt take much. For ex. One little simple thing I am doing is contacting my school about putting up informational flyers. In the bathroom stalls at my school they put up informational flyers about all sorts of things, mostly health realted, so I contacted them and am getting a celiac informational flyer to be put up in all the stalls ( and how ironic, someone may just walk in with horrible D or C and sit there reading the symptoms list...... :lol: )

I think information sharing is very important too! I took my daughter out for dinner tonight. We are starting gluten-free on Tuesday after her Celiac panel (she's 6). She took her gluten free menu and away we went on a trial run. Her gluten free meal came with a huge piece of texas toast right on top of the chicken. I had been talking with the lady about gluten free and what it was all about because she admitted she didn't really know so when she came to check on us I mentioned the toast to her. She said she forgot to tell them to leave off the bread! It was OK for us since this was a trial run but I nicely told her how important it was to remember. It freaked me out about trusting anyone in the restaurant business to keep my daughter safe!

Susan

Amyleigh0007 Enthusiast

I agree! Raising awareness is a wonderful way to cope. I am making gluten free chocolate chip cookies for a school fund raiser dessert auction next month. For a few minutes, everyone at the auction will be thinking of Celiac disease. I even wrote a small blurb about Celiac for the auctionier to say before the bids begin. Maybe it will open some eyes and make someone realize that they may have Celiac. Plus, the lucky winner will get to experience how good gluten free goodies can be!

JNBunnie1 Community Regular
I agree! Raising awareness is a wonderful way to cope. I am making gluten free chocolate chip cookies for a school fund raiser dessert auction next month. For a few minutes, everyone at the auction will be thinking of Celiac disease. I even wrote a small blurb about Celiac for the auctionier to say before the bids begin. Maybe it will open some eyes and make someone realize that they may have Celiac. Plus, the lucky winner will get to experience how good gluten free goodies can be!

That's awesome!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    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

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • 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
×
×
  • 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.