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

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. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • 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.