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

My Experience With Being Gluten Free

evie

By evie
in Coping with Celiac Disease

Recommended Posts

Canadian Karen Community Regular
Canadian Karen
Posted

Thank you evie for sharing and Happy Birthday and Happy Anniversary.

Your post gave me an important lesson. See, sometimes I feel that I no longer should be posting saying "Do this, you will feel so much better", because in actual truth, I wouldn't know because everything I have done so far has had no effect in improving my particular situation. But your post reminded me that just by the fact that I am here giving people good advice is what is important, and to be a reminder of what happens to our bodies if we are not diagnosed for decades OR refuse to take this diet seriously. I have to live with the consequences now of misdiagnosis (officially diagnosed now a refractory celiac sprue), but that doesn't diminish the importance of my contribution in any way, I can see that now...... I once thought that I would just be a "downer" and just a reminder that things aren't always "happy, glory, all is well now" once you go gluten free. But your post made me realize that my experience is just another dimension of this forum.

Hugs to you!

Karen

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Evie,

Hope you had a great birthday!!! As someone who is still struggling for answers, it is encouraging to see a positive post. Happy to hear you are doing so well!

xoxo, Laura

evie Rookie
evie
Posted
  • Author
Evie, the ddog just about killed me, you're taking the dear everything to the next level, I think. :D:blink::ph34r:

I am glad you had a good time!

Ursula, you are right!! :) but that's the way I am, exuberant when I am happy!! :P He is a Good, giant dog, they have coached him well!! DOG, dd and hubby got off travelling back to Wyo. about 8:30 this am and we are doing wash and getting back to normal to quiet house. I just set up appt. to see Dr. for WHY my feet are swelling so much even on meds. will also get back MRI and an echogram tues., so that will be a full day. you see when i have a problem I TRY to get to the bottom of it, most of us do one way or another. We Celiacs are survivor types!! ;). have good day all and THX for chiming in with BD's and other helpful messages + encouraging all!! I think that REAlly helps all. :):P:lol::D evie

chrissy Collaborator
chrissy
Posted

WOW!!! evie, 80, 78, and 60 years together! if only we can all have this kind of success together. thank you for your gentle and kind presence on this board!!!!

christine

evie Rookie
evie
Posted
  • Author
Happy birthday, Evie! And--we have the same birthday!

Also wanted to let you know that, pretty much because of you, Nini, and Lynne, I have been gluten-free since finding this board in January--even though I have no diagnosis, just a really high IgG (which the dermatologist said meant nothing, even though I had a positive dietary response) on top of Hashimotos's and GERD. I have lost over 20 pounds of fat, several inches of bloating, been reminded what normal poops actually looked like (hadn't seen them in a couple of years), and eaten healthier than ever before (since I make everything from scratch now).

You guys have probably saved me from multiple autoimmune disorders, and have definitely saved my kids from countless tummy aches (they will get blood tests next week).

From the bottom of my heart--thank you!

Fiddle; Happy Birthday to you, belated!! :) How old are you or do you tell? :rolleyes: I am soo happy to be alive @ this age, have had more than one close call :), but just feel God has a plan for me and always has had. I am to help others as much as I can, even if it is only a phone call or email message. Our girls are very much like that too and hubby used to do volunteer work when he was healthier. He still does his kind deeds when occasion strikes ;). We are catching up with wash on GREAT, sunny, fall day but think it is time for me to read paper & get my swollen feet up!! :( . you have a great day!! I am so glad I have been a bit of help to you or anyone, I know your answers will come and I am still working on mine. Tests and Dr. appt. tues and go back to GI early Oct. :) evie

elisabet Contributor
elisabet
Posted

Happy birthday Evie,

and thank you for the informations.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    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
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.