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Celiac Disease & Gluten-Free Diet Blogs

 

First Blog

I have arrived   This is my first blog. Not that you care, or it's keeping you up at night, as pre-diagnosis probably did. I am a writer and dancer and celiac. All three are difficult and delightful.   I thought living without wheat, etc would be devestating. It is not, rather it is illuminating. Until last year I was pasta girl, pizza girl, bisquit girl, cinnamon bun girl. I had no pain f...

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A Quick Summation Of The Past Year Since The Diag.

*July 2, 2004--my mother's birthday and the day of my bloodwork (IgG)*One week later--tested positive for IgG antibodies. Was told by my Gastro's head nurse, "Here are all the things that you can't have. Are you ready?" *Found this site and support group on the 17th.*Bought rice bread, tasted it for the first time, and hated it. Got used to it eventually, and now enjoy it, except when it crumbles...

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I'll Bet You Can Relate

Greetings, all, hope this finds you well. The following is my journal entry from the night before I began my new celiac lifestyle. I wrote it to help process my own feelings, and thought it may be beneficial for another struggling "newby" to realize you are truely not alone. Where to Now?I'm angry and lost. Thought I'd found the answer recently with a name to the mysterious symptoms that have...

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So, Get This...

I shop at a large local grocery store chain (Fred Meyer, for those of you who know it) and they have a wheat free section. They have recently moved this section and first it took them about two weeks to move the sign with it and then the other day I was purusing it, looking for more stuff and they had products right under the wheat free sign where the first ingredient was wheat! I'm not kidding...

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Starting From The Beginning

I'm the lucky one in this crowd, no doubt about it. I had a baby and after three month of diarrhea the Dr. quickly diagnosed me as being allergic to gluten...that was 5 days ago. 3 months of suffering sounds like nothing compared to the other stories out there....I have some liver damage, but that will heal with time! Where do I go from here? Well, I feel incredible. 5 days sans gluten has...

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Hello!

Hi! Welcome to my blog. My screen name is mytummyhurts, but my real name is Abby, I am 26.I was diagnosed with celiac disease last October. I have basically been gluten free for a few months now. But honestly, I'm still getting used to all the ingredients and I think I still make mistakes. I also need to buckle down and research all my beauty products, etc. I had been feeling pretty good up until...

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Intro - Welcome to my blog

Welcome to my blog. I will be using this space to bring together information I have gathered about my specific food intolerances so that maybe someone out there who identifies with any of them can make some connections to help them figure out what might be going on with them.A list of food intolerances and allergies I seem to have at this particular point in time (who knows, there may be more...

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Intro

So this is my intro post I guess. I actually do have a main blog, dedicated to my 2 1/2 year old daughter at O. Baby! and a main blog (currently on hiatus) at Life and Love in the Desert. But I figured a celiac.com blog might be interesting too.I was diagnosed with celiac disease the first time when I was about one year old, in 1976. I was originally diagnosed with failure to thrive and after...

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July 22, 2005

well, had a rough night. I had wheat yesterday and boy, did I pay for it. All night long my stomach ached and cramped. It's also kicked up my ra, could hardly get out of bed this morning. I can't wait to get off prednisone next month!I made myself some scrambled eggs with a little cheese. put a little miracle whip on that and had a glass of orange juice. oj won't help the hypo but i knew...

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Getting Started

Well- this is my first entry. I'm actually a journal keeper and a writer so this should come fairly naturally to me although I've never gotten into this whole blogging thing. I was just "diagnosed" with Celiac's back in January (2005) but we'll get into that later. I've got quite a story to tell and I hope that, if nothing else, it makes one more person out there aware of Celiac's. But, all things...

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nurse diesel Introduction

Greetings, All. I hope this finds you well. I'm halfway into my 2nd year of my Celiac diagnosis. My story is much like yours. I was sick as a dog, dropping weight, and suffered with unrelenting bone pain and fatigue. I was fortunate enough (unlike some of you ) to cross paths with a GI doc who suspected Celiac from the start. From there, I struggled with depression and deprevation regarding the...

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tredart Introduction

Hi. This is about how I fought to get my energy back and live my life again. Before I began a glutin free diet, I was almost incapacitated with fatigue, but now, five years later, I feel strong and am able to live my life. I can't say I'm 100%, and I still have bad days, but nothing like the days I spent lying on the couch, too exhausted to answer the phone. Today, a bad day means I'm tired early...

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    • Hi Keight and KK, thanks so much for your detailed responses!

      KK, thanks for the comments/suggestions.  My recent B12 test and others were all normal. I already take daily multivitamin, but I will also ask my doc for additional tests of thiamine, magnesium, iron, adrenal levels just make sure something is not being overlooked.  

      Keight, your comments esp. ring a bell with me:

      "I suspect my poor body has been needlessly flogged for years. Probably all my adult life. It simply gave up and metaphorically collapsed last year. I could not last a week's holiday alone in Kuala Lumpur. I spent the last three days of my vacation in bed. It was that bad." 

      "I want, so desperately, to have the energy to do things, to be things, to give. But I truly have very little energy for my daily necessities. On paper, things are looking good, but I am back at the dr again, begging for some way to find out why I am still dragging myself through each week."

      That is EXACTLY how I feel EVERY DAY!   For me, I reached that breaking point "collapse" and downward spiral--not just metaphorically, but literally--last June, when I ended up in the ER fearing a heart attack or stroke after a really terrible day at work (rude client and boss both screaming at me during back-to-back phone arguments).  After I hung up, I tried to deep breath/calm down but immediately had a sudden, severe headache/heartburn--the worst of my entire life. (I NEVER had headaches before in my life).  Thankfully, all the physical tests were normal but the doc did say I had a full-blown panic attack which made my blood pressure suddenly spike through the roof, causing the headache and heartburn. (I also had no history of panic attacks and my low blood pressure was always in the slow normal range.)  I was very relieved I wasn't about to die. 

      But there is nothing like lying in an ER alone, hooked to a beeping EKG machine and fearing imminent incapacity/death, to make one "wake up" and take long-overdue stock of one's life and health.😵  That day, I FINALLY understood I needed to listen to--not minimize or ignore, as I had for years--even subtle "hints" my body/mind was sending me for YEARS (insomnia, anxiety, depression, fatigue, bad jobs, job burnout)....because if I don't listen and, more important, make changes/seek help, it WILL eventually end up in full-blown physical/emotional crisis. 

      After quitting that job last year, I hoped and expected to slowly but surely feel more rested, energized, relaxed after a few months of no work.  Instead, no real change.  In Sept. I began to notice sudden bout of severe IBS-like symptoms (constant D, C, gas).  I thought it was just a flu bug or a bad meal.  I tried probiotics, bland diet for a few weeks.  No improvement. That's when I got a gluten blood test (abnormal--224) and EGD/biopsies (normal "no celiac sprue"; "mild inflammation").  I started gluten-free diet late last year/early this year.  Subsequent blood tests show definite decline (down to 73) but still not nearly "normal" range yet.  All other blood tests show normal vitamins/minerals.  TSH normal range.  Yet I STILL feel exhausted/entire body sore/stiff 24/7.

      I suspect much of my ongoing, current fatigue is related to plain old "burnout" and chronic depression issues which, of course, are only deepened by this new diagnosis, CV pandemic, and unemployment since last year.  Thus, I think I will give the anti-depressant a try and see if that helps.  I also plan to try MH counseling.  I live alone and the isolation, esp. during CV, only magnifies our health worries.  Perhaps I should get a pet.  Here's an interesting article about "service dogs" who can actually detect gluten: https://www.platinumperformance.com/articles/canine-companion-with-a-cause

      Sorry for the long-winded post..and thanks for reading eveyone!..This chatroom certainly helps me feel less alone as I navigate life's challenges! 


    • Keight, 

      Without enough thiamine to turn carbohydrates into energy, the body uses a shortcut that uses less thiamine and turns carbohydrates into fat.  This may be the explanation for the increase in obesity and NAFLD.  

      High fructose corn syrup has to be processed through the liver, just like alcohol, and depletes thiamine stores and causes NAFLD.   

      Niacin is also helpful in reducing liver enzymes and triglycerides.  

      The eight essential B vitamins are water soluble and need to be replenished every day.  They all work together, and, with Celiac Disease, it's possible to have deficiencies in more than one of the B vitamins.  Because they are water soluble, any extra your body doesn't use is excreted in urine.  

      Please discuss with your doctor the benefits of supplementing thiamine and niacin.  I'm not a doctor.  I'm a microbiologist who has done a lot of research.

      Recently, scientists have discovered that during thiamine deficiency, the thiamine transporters that allow thiamine to enter cells quit working.  The chromosomes that controls the thiamine transporters are on the same gene as Celiac Disease and Diabetes and other autoimmune diseases we Celiacs get.  In order to turn the transporters back on, high doses of thiamine are needed.  Sometimes results aren't seen until 500mg or 1000mg are taken for several weeks, then the dose can be lowered to 300 - 500 mg a day.  

      I have Type Two Diabetes which requires extra thiamine.  I take at least 300mg a day, 500mg if I'm eating more carbs.  I control my diabetes with diet, and by supplementing with niacin and thiamine.  I don't have NAFLD anymore.  My doctor was pleasantly surprised. 

      Hope this helps!  Thanks for being interested! 

      Knitty Kitty


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