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

Coming Out Of The Flour-Bin...


MrAtari

Recommended Posts

MrAtari Newbie

I guess I have a variety of things running through my head, least of which concerning forum edicate (though I will make the attempt). So I'll just start at the beginning, and hope I am recieved with a little more compassion than the rest of the people I've encountered in life.

I was diagnosed a few years ago now, I want to say January of 2010. So fairly recent. I'll admit here and now, I thought going gluten free was no big deal. That Celiacs disease, in my head, was the silliest thing I could have ever imagined, let alone find out existed. Joke is on me apparently.

Don't be insalted, these were just my first impressions. I was upset and angry, and quite frankly still am. I only have myself to blame however, as I didn't take thise disease seriously in the beginning as maybe (most of you) you have. I thought it was a simple solution, that maybe even miniscule doses (such as contaminates or chemicals) were fairly laughable. Again the joke was on me.

Doctors are nice people, but they can't tell you everything if you don't ask the right questions. They pretty much say you are screwed with this thing now, and that's their job. I understand that. I'll tell you this - I wish I had not been a cocky idiot. Wish that they had more immediate information and support to give (locally) than a simple photo-copied pamphlet of a generalized gluten-free diet. No wonder I treated it like a joke, their method of treating the patient wasn't much better. But hey, that's all they could do right? So I walked forward in the dark.

To whomever reads this, yes, I am an angry Celiac. I'll tell you what though, I only have myself to blame. I was given resources countless times and ignored them. I thought it was as simple as "avoid bread and preservatives" (which btw turns out to be a LOT of things) ... which I did happily for a while. Soon I discovered how limited my diet was, or, what I was limiting my diet to, to be precise.

Say for example, I am the type of person that can eat the same thing for a week straight with very little complaint. Later on I found myself craving (MADLY) for my old dietary habbits. I miss the Subway, McDonalds, any mom-and-pop dinner. I'm a lover of the sandwitch, and I hope I'll find something satifying one day. (I do love Udies Bagles however...Great for Burgers..)

Back to the point, I limited my diet severely to the few types of foods that I knew were safe. This in my experience turned out to be a GIAGANTIC MISTAKE. Variety is important, just as any new discovery is. Some things are hard to do, and looking more inward at myself (lol) this happens to be cooking. Some of the recipes I've found seem so...gormet...It's fairly intimidating to a person like me, that is not the experimental type.

Yeah I'm a big dummy, but even dummies are celiac w/DH. I'm sure most could figure that out by now. Maybe it just takes me a while to "warm up" to things, this disease being one of them. Just today I found out about hygene (soaps, detergents, etc.) and for once after a shower my skin didn't flake off. Feels nice.

So I'm gunna wrap this up. I found this forum here, and it has more information than any generalized Celiac site I've been too so far (then again, I do have a short attention span. STOP JUDGING!) so I wanted to say hello. It has been a very large help for me, regarding personal hygene. Hopefuly more in the future. Apparently I need new cookware as I have been cross-contaminating myself. Just another new thing I learned, and am thankful to learn.

So to everyone here, thank you. My name's Adam, and I hope my (bitter) personality isn't too off-setting.


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

Hi Adam,

Welcome to the forum. All of us learn more here than anywhere else, I think.

Di2011 Enthusiast

Hi Adam,

I hope gluten free works for you. I was pretty crazy/incomprehensible in my early days of gluten problems so hope you will continue to post like I did - reluctantly. Posting problems/questions issues one at a time was my lesson.

GFinDC Veteran

Welcome to you Adam. We all learn at our own pace, even if we are in the came classroom. No biggie, the goal is the same to learn how to eat a healthy gluten-free diet. Since you mentioned DH, you might want to check out the Dermatitis herpetiformis section of the board. And the recipe section might help to. Try a search on snack ideas or breakfast idess. Not everything is complicated to cook. :) Hello crock pot!

  • 2 weeks later...
deltron80 Rookie

welcome to the rest of your life

Roda Rising Star

Welcome MrAtari(Adam)! How to deal with celiac disease is a big learning curve. It's unfortunate that a lot of doctors tell you that you have celiac and send you on your way with not much resources. I had a month from when my blood work was positive till I had my scope that I scoured for information(I had been doing research prior on my thyroid disorder and anemia when celiac kept coming up so I asked to be tested).

My endocrinologist, the doctor who order the blood tests, wanted me to consult with a GI and go off wheat. Boy I'm glad I did know to stay eating normal until I had my scope/biopsy. I didn't know though I didn't have a complete celiac panel. I still got my answer though. After I had my biopsy the path report was pretty conclusive for celiac but my GI gave me the option to stay eating normal and recheck blood work in 3 months or go on the diet. Again, I feel fortunate that I was "lurking" around this site for awhile and knew what I needed to do. Then I decided to consult with a dietatician..I knew more than she did and even found mistakes in the information pamplets she was handing out! Frustrating.

Like I said before I was greatful I had found this resource beforehand. None of the people I consulted with had a great grasp on the whole picture of living gluten free. I feel bad for people who only get partial information.

Again welcome. This can be a great site for information.

  • 3 weeks later...
xjrosie Apprentice

Welcome.

I'm pretty new to the forums too, and this whole thing is very distressing; I totally agree with you there.

But, now it's been two year. No point in beating yourself up about what is in the past. Move on and proactively get involved in finding the resources (obviously you are, because you're here!).

I don't have Celiac, but my daughter does, and she's T1 diabetic too. What a PITA!! I did mention to my best friend the other night that I think I might have it, and he asked why. I said, "How often and how long have I been complaining about stomach aches, tiredness, depression, and general achiness?" His answer was daily, for years. So I'm getting tested. I'm nervous.

But at least it's not the end of the world. I can honestly say that the food offerings for Celiacs has practicaly quadrupled just in the six months that I've been dealing with it with my daughter.

I've found pizza places with GOOD gluten-free pizza. Chain restaurants are now catching on. I even saw a Chex commercial last week that was solely about the five flavors of cereal that are gluten-free. So it won't be long before the food we need to eat is very mainstream.

Don't let it defeat you. It's going to get better, or at least you'll get more used to it, right?

I've only been here a couple days, and the people here aren't afraid to answer questions straight-up or even pm you with additional resources. It's been great, so come back more!


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. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Stomach burning and neuropathy

    2. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    3. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Stomach burning and neuropathy

    4. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,842
    • Most Online (within 30 mins)
      7,748

    JenKnight
    Newest Member
    JenKnight
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
×
×
  • 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.