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

Publications/organizations/foundations!

Frances03

Recommended Posts

Frances03 Enthusiast
Frances03
Posted

Can you all recommend some way for me to STAY INFORMED?? I went to the celiac disease foundation website and I was NOT impressed. I dont quit understand what I get with my $35 membership. Some "handbook" that is not explained at all, like I have no idea if it's a 4 page pamphlet or a 300 page notebook or what? What I'm wanting is some thing I can join or sign up for or something, that will keep me informed of news regarding celiac disease, and also products that are new, and products that were gluten free but are no longer, etc. Can anyone recommend something? I feel like I'm just out of the loop, as I have 3 children and am newly pregnant with our 4th (for the 4th time, 3 miscarriages before my diagnosis), and I want to make sure I'm doing the best I can for this pregnancy, etc. I know I'm rambling but I guess I'm feeling upset at the moment and overwhelmed, so I'm sorry about that. Thanks much for any help!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I know it's frustrating. One of the best places I have found to stay informed is right here. Scott is good about posting new articles in the publications and publicity section of the board as well as on the home page. I know this wasn't real helpful and hopefully some others will have some other ideas.

tictax707 Apprentice
tictax707
Posted

The CDF website IS pretty lame. But they do send you a newsletter on a regular basis which I find useful, mainly for the ads. It's realy chock full of gluten free food ads. Some are the same old standards, but they are good about getting new product ads in too. As for the articles in the newsletter, I have found that it's hit or miss in terms of usefulness for me, but it seems like there is a lot of stuff dedicated to raising kids with celiac disease, which may be relevant to you. Hope this helps a bit! Sorry to hear you are so frustrated.

lucia Enthusiast
lucia
Posted

What about "Living Without" magazine? Is that any good?

sa1937 Community Regular
sa1937
Posted

I have to agree with ravenwoodglass. This forum is the best place to learn about this disease. I've learned more here than anywhere else. Just ask a question and someone will respond who has already been there, done that.

Recently I subscribed to Living Without. Just got my second issue. Well worth the money and they have a lot of info and recipes on their website, too. I got an introductory rate of $19.95 for a year (don't recall if it was from their website or Facebook).

BethM55 Enthusiast
BethM55
Posted

I enjoy the Living Without magazine and website, although the print magazine is kinda pricey. I signed up for emails from the website, and get recipes. The website is helpful, you might want to check it out. (livingwithout.com)

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I second staying here and going with the Living Without magazine.

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

Celiac.com Sponsor (A8-M):


Frances03 Enthusiast
Frances03
Posted
  • Author

Okay, thanks guys! I'll definitely check out the living without mag and website. I hadn't heard of it at all, so this is great info. Keep it coming if anyone has any more suggestions!

BethM55 Enthusiast
BethM55
Posted

Okay, thanks guys! I'll definitely check out the living without mag and website. I hadn't heard of it at all, so this is great info. Keep it coming if anyone has any more suggestions!

I know this is off topic, but what is your picture? I remember that cartoon character, but can't remember from what! :lol:

Jestgar Rising Star
Jestgar
Posted

Is it a shmoo?

BethM55 Enthusiast
BethM55
Posted

Yes, a shmoo! Thank you, you have a good memory.

"Drawn by Al Capp in his comic strip Li'l Abner in 1948. The Shmoo is a small lovable creature. It laid eggs, gave milk, and died of sheer extacy when looked at with hunger. The shmoo loved to be eaten and could taste like any food you desire. Shmoo hide, cut thin, made a fine leather. Even shmoo whiskers made excellent toothpicks. The shmoo had the power to supply the whole world with all of its' wants and needs. The shmoo reproduces asexually, and only requires air to stay alive." (urbandictionary.com)

Frances03 Enthusiast
Frances03
Posted
  • Author

Yep, it's the Shmoo!! My husband likes to go around driving me crazy by singing the song from the cartoon "The Incredible New Shmoo" and I like the Shmoo so I picked it. I would also like to be able to lay eggs and give milk, LOL (well I might be able to give milk in about 7 more months).

Yes, a shmoo! Thank you, you have a good memory.

"Drawn by Al Capp in his comic strip Li'l Abner in 1948. The Shmoo is a small lovable creature. It laid eggs, gave milk, and died of sheer extacy when looked at with hunger. The shmoo loved to be eaten and could taste like any food you desire. Shmoo hide, cut thin, made a fine leather. Even shmoo whiskers made excellent toothpicks. The shmoo had the power to supply the whole world with all of its' wants and needs. The shmoo reproduces asexually, and only requires air to stay alive." (urbandictionary.com)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
    3. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was...
    4. Amy Barnett
      - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

      What is the best liquid multivitamin for celiac disease?
    5. Scott Adams
      0

      Quick Gluten-Free Shrimp Stir-Fry With Crisp Vegetables

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.