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

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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    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

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.