Jump to content

  • 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):

Newbie, Longtime Lurker

GFJo

By GFJo
in Coping with Celiac Disease

Recommended Posts

GFJo Newbie
GFJo
Posted

Hello fellow gluten-free folk!!

It's taken me 10 months but I've finally summoned the courage to join in. I've never posted anywhere online before and I feel ridiculously nervous. I'm not used to putting myself out there.

My gluten-free journey started last summer when I finally took my doctor's advice (seems I have one of the good docs). She'd suggested to me numerous times to try a gluten-free diet, but I was sure that wasn't the problem. Until I was so sick I didn't know what else to do. So I tried the diet, er new way of life, and to my utter amazement I got better, within days. And there's been no looking back.

I've been through the doubt, and anger, and depression, and I think I've finally reached acceptance. I'm still learning the finer details of hidden ingredients, and I seem to slip up more than I should. My symptoms seem to be pretty classic for Celiac (although no official diagnosis): bloating, gas, diarrhea, excessively tired, then angry, and my face will almost instantly break out. I think I may also have a wheat allergy because I get itchy if I touch wheat, and once I got a crumb on my lower eyelid (don't ask me how!) and my eye swelled up for almost 24 hours.

I live in a rural area and I have yet to meet anyone else gluten-free. Although I know they must be out there because the Kinnikinik (spelling?) pizza crusts are always selling out! There are no support groups in my area, and I'm getting a little tired of not having anyone to talk to.

I've been reading these boards for months and it has been a huge help, if not a lifesaver, for me. Thank you all for helping me through a tough time. I hope I can now return the favor to newcomers.

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Johanna, I am glad you have decided to finally let us know you are around! I am sure we can all help each other.

Since you realize that there must be other gluten intolerant people around, why don't you put an add in your local paper, asking if there is an interest in forming a support group? Do you have a health food store nearby? You could ask them if they could put up an ad for you, asking other people with gluten intolerance to call you.

Or you could even put a notice up in the store you buy your pizza crust in. Since others are buying those as well, they might get in touch with you that way.

Also, maybe your doctor (a rare specimen indeed, I am glad you have an excellent doctor) knows other people with gluten intolerance. And while she can't give you other people's names, she can ask those people to call you. Or maybe you could put a notice up in the waiting room, with your doctor's permission.

jerseyangel Proficient
jerseyangel
Posted

Hi Jo :D

Welcome to the board! I'm glad you decided to join us.

happygirl Collaborator
happygirl
Posted

Welcome to the board! So happy you decided to join. Do you feel like you "know" many of the members already?

Please chime in----as you can see, there are always so many who are in need of help. Not everyone knows every answer, but everybody chipping in where they can makes a huge difference to that *one* person that needs help....

larry mac Enthusiast
larry mac
Posted

Add my welcome to the list GFJo. May I call you GFJo? You are the best kind of newbe. One that has been lurking for almost a year, is already up on the plateau of the learning curve and so won't ask a lot of unresearched questions.

BTW, don't believe anything you've heard about me. I really am a nice guy. :D

best regards, lm

lizard00 Enthusiast
lizard00
Posted

Welcome Jo!!!

Glad you decided to come out of the shadows and say hi! I look forward to hearing your experiences as another member of the gluten-free club! B):D

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. I am glad you decided to join us. There is a wealth of info here and lots of very supportive folks who know what you have been going through. Glad you found us.

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

Celiac.com Sponsor (A8-M):


elye Community Regular
elye
Posted

Hi, Jo! A big welcome. Indeed, the more the merrier. If you stick around long enough, you really will begin to feel like you're in a big family, sluggin' it out together.... :)

curlyfries Contributor
curlyfries
Posted

Hi Jo! I did the same thing, lurking in the shadows, but only for a couple months. And this was also my first time posting online, anywhere. (I had to get my daughter's help :P ) During that two months I googled the heck out of this forum :wacko: I can't believe I have only been a member for just a little over 2 months! I also can't believe that in that time I have posted 70 times :o . ( I'm really not that talkative :ph34r: ) I have also discovered emoticons! Can you tell :lol: ?

Anyway, you'll feel like family in no time!!!

Lisa

curlyfries Contributor
curlyfries
Posted

Oh wow!! I was wrong--- it hasn't even been 2 months :rolleyes: !!!

Lisa

GFJo Newbie
GFJo
Posted
  • Author

Thanks everyone for the warm welcome!

Ursa Major--I have been thinking a lot about starting a support group. Thank you for your ideas on how to reach out to others.

larry mac--I'll try not to ask any stupid questions! ;)

I'm really glad that I joined in!

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. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      1

      New Study Finds 1 in 10 Celiac Patients May Have Additional Autoimmune Disorders (+Video)

      Kinda glad I read this and some related materials. My celiac symptoms seem mild and I sometimes question if the hassle of the gluten-free diet/lifestyle is worth it for mild symptoms. This is one of the answers to that. gluten-free diet can delay onset/progression of autoimmune polyglandular syndrome, but cannot reverse it.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,057
    • Most Online (within 30 mins)
      10,442
    Faiga
    Newest Member
    Faiga
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
×
×
  • Create New...