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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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      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Are Lindt chocolate balls gluten free?

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  • Posts

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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