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

By Sara T
in Coping with Celiac Disease

Recommended Posts

Sara T Newbie
Sara T
Posted

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
Bobbijo6681
Posted

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
orchid1
Posted

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
Sara T
Posted
  • Author

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
Sara T
Posted
  • Author

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
jackay
Posted

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.

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. Scott Adams
      - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t sh...
    2. KDeL
      - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac...
    3. Peggy M
      - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

      Kroeger has quite a few Gluten free items. Right now they are redoing my Kroeger store and are adding everything into the regular sections. Since this was done some new ones have been added. Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    4. Scott Adams
      - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors

      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs...
    5. trents
      - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test uncertainty

      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,275
    • Most Online (within 30 mins)
      7,748
    Elizabeth Brown
    Newest Member
    Elizabeth Brown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      diagnostic testing variance

      By Scott Adams · Posted

      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      diagnostic testing variance

      By KDeL · Posted

      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Does Kroger Offer Affordable Gluten-Free Options?

      By Peggy M · Posted

      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Scott Adams · Posted

      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Test uncertainty

      By trents · Posted

      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
×
×
  • Create New...