Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Still Learning


Sara T

Recommended Posts

Sara T Newbie

Hi, I'm Sara and I'm new to the site, even though I'd read other topics before. I found out about my Celiac when I was 18. I had gotten very sick to the point my family and doctors thought I was dying. I was lossing 10+lb's a week and just to the point where I couldn't get out of bed. It took me almost a year after find out that I had Celiac Disease is when I finally felt normal again, I was down to my normal weight and feeling amazing. A year ago, I wasn't living at home and was on my own. I ended up gainning almost 60 because I could't afford to eat right, worst thing anyone could ever do to themselves. I'm back on a gluten-free diet but I'm still not feeling great. I'm still always tried, among other things. I know it's going to take a long time to heal and get better, after all my body still has all that lovely gluten sitting in my fat just waiting.

I really wanted to post this to let other know, who are having a hard time, or just getting started. It's not worth eatting gluten, I know it's hard to find food thats gluten free and find it at a fair price. Don't give up on yourself, or you'll never heal. There are days where I just wanna eat whatever, but it's coast me more in the long run, rather than just eatting gluten free. Also, read these forms, it's so nice to be able to read other people's post who are dealing with the same thing you are, and you wont feel so alone. Well it's late for me and honestly, now I'm just rambling, haha, hope everyone who reads this is doing well and is on their way to being 100% gluten free!


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



Celiac.com Sponsor (A8-M):



Bobbijo6681 Apprentice

I am a very STUBBORN and Hard headed person, and after being 100% gluten free for a week and being mostly gluten free( not eating stuff I know I can't have, but I am sure that it snuck in a time or two) for almost 2 weeks, I had the not so brilliant idea to eat what I wanted last night. I thought " I have been doing good for 2 weeks, one meal won't hurt me" OH BOY was I wrong....I am still paying for it today. Maybe it was good for this to happen though, maybe I will remember this when I get the hair brained idea to try and punish myself. I knew what I was eating was bad, but I just didn't care, and I will NEVER do that again. I guess the problem for me was that I never really had too much pain associated with my GI problems. I had cronic diaherrea but that was really about it except for being tired all the time and vitamin deficient. Man let me tell you I know what everyone is talking about when they say that they are sick, I just needed a reality check I guess.

Anyway thanks for letting me vent about my own stupidity!!!

orchid1 Newbie

Hi, I'm Sara and I'm new to the site, even though I'd read other topics before. I found out about my Celiac when I was 18. I had gotten very sick to the point my family and doctors thought I was dying. I was lossing 10+lb's a week and just to the point where I couldn't get out of bed. It took me almost a year after find out that I had Celiac Disease is when I finally felt normal again, I was down to my normal weight and feeling amazing. A year ago, I wasn't living at home and was on my own. I ended up gainning almost 60 because I could't afford to eat right, worst thing anyone could ever do to themselves. I'm back on a gluten-free diet but I'm still not feeling great. I'm still always tried, among other things. I know it's going to take a long time to heal and get better, after all my body still has all that lovely gluten sitting in my fat just waiting.

I really wanted to post this to let other know, who are having a hard time, or just getting started. It's not worth eatting gluten, I know it's hard to find food thats gluten free and find it at a fair price. Don't give up on yourself, or you'll never heal. There are days where I just wanna eat whatever, but it's coast me more in the long run, rather than just eatting gluten free. Also, read these forms, it's so nice to be able to read other people's post who are dealing with the same thing you are, and you wont feel so alone. Well it's late for me and honestly, now I'm just rambling, haha, hope everyone who reads this is doing well and is on their way to being 100% gluten free!

After i went gluten free, i would still get bouts of fatigue, drowsiness, tiredness. Found out i was anemic because i wasn't absorbing enough vitamin B 12 and vitamin B 6.

  • 3 weeks later...
Sara T Newbie

After i went gluten free, i would still get bouts of fatigue, drowsiness, tiredness. Found out i was anemic because i wasn't absorbing enough vitamin B 12 and vitamin B 6.

My levels are all off and have been for a while. I haven't been able to meet with my new GI doctors, but I'm guessing that everything is still really off. They thought I was anemic and I was going back and forth between being anemic and not being anemic. I know it sounds crazy, but every time they think they have it right, my stuff changes. I'm hoping once I get my health insurance back I can get some help, I'm always fatigued, I mean I can still sleep all day which I know is bad but I push myself to stay up during the day. Good luck and I hope you get back on track!

Sara T Newbie

I am a very STUBBORN and Hard headed person, and after being 100% gluten free for a week and being mostly gluten free( not eating stuff I know I can't have, but I am sure that it snuck in a time or two) for almost 2 weeks, I had the not so brilliant idea to eat what I wanted last night. I thought " I have been doing good for 2 weeks, one meal won't hurt me" OH BOY was I wrong....I am still paying for it today. Maybe it was good for this to happen though, maybe I will remember this when I get the hair brained idea to try and punish myself. I knew what I was eating was bad, but I just didn't care, and I will NEVER do that again. I guess the problem for me was that I never really had too much pain associated with my GI problems. I had cronic diaherrea but that was really about it except for being tired all the time and vitamin deficient. Man let me tell you I know what everyone is talking about when they say that they are sick, I just needed a reality check I guess.

Anyway thanks for letting me vent about my own stupidity!!!

You're welcome! You're not alone, I keep reading and there's a lot of people out there still having a hard time staying on track, and it is hard. But this site offers a great book called "Gluten-Free Grocery Shopping Guide" the 2009-2010 edition. Deff go and get it. My mom ordered it for me so I can go shopping and feel better knowing I'm staying gluten free. There's a lot of products out there that are gluten free that you were used to eatting before you found out. It's worth the 25$, it's gonna help, and I've had the book for a few weeks know and I'm loving it. No more standing reading everything and not knowing! Give it a try and good luck!

jackay Enthusiast

I'd say being gluten free is a life long learning process. It does gets a lot easier the more we learn.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,200
    • Most Online (within 30 mins)
      7,748

    Elisa Stutsman
    Newest Member
    Elisa Stutsman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...