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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!

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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.

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  • Recent Activity

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      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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