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Being Sick Is My Full Time Job!

feelingbetter

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feelingbetter Rookie
feelingbetter
Posted

I haven't posted much. I am 6 weeks gluten free and 2 weeks dairy, soy and corn free. I only eat meat. vegs, fruit and eggs. No processed food.

I am 45 and finally seeing an alternative doctor who feels I have celiac. I am waiting for entero results. He is also treating me for adrenal fatigue, B12 shots, malic acid and betaine hydrochloride to increase stomach acid. I also take very high doses of vitamins. I also take a salt solution to increase electrolyte balance.

I must say the constant body pain is much much better now that I am on this diet. The problem is this fatigue which is so severe. I am very weak and tired most of the time. Yesterday I felt so depressed and just cried and cried. I have been very sick for the last 6 months. I have been exhausted my whole life. Depression is something that I have struggled with since childhood. I lost my career in 2004 as I was so burnt out. I took myself off of anti-depressants in Oct/07 and started taking high doses of vitamins. The depression was gone after 2 months.

I know I am feeling sorry for myself. Most people do not understand how serious celiac is and the damage it can do. I know that I will be understood here.

Thanks Brenda

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RiceGuy Collaborator
RiceGuy
Posted

Yeah, I do understand how it feels to be exhausted constantly. It does get better, and for me it was magnesium which has helped most. That and just giving the body the time it needs to recover. I would try to sleep a lot, though my body was so messed up I found it nearly impossible to remain asleep long enough to do much good. Thankfully over time it has improved quite a bit since then.

So from my own experience, I'd say make sure you're getting a good magnesium supplement, and that the vitamins are real, not synthetic.

Hang in there. Hope you feel better soon!

feelingbetter Rookie
feelingbetter
Posted
  • Author
Yeah, I do understand how it feels to be exhausted constantly. It does get better, and for me it was magnesium which has helped most. That and just giving the body the time it needs to recover. I would try to sleep a lot, though my body was so messed up I found it nearly impossible to remain asleep long enough to do much good. Thankfully over time it has improved quite a bit since then.

So from my own experience, I'd say make sure you're getting a good magnesium supplement, and that the vitamins are real, not synthetic.

Hang in there. Hope you feel better soon!

Thanks RiceGuy- I take a pharmaceutical grade vitamin from Truehope called Empower Plus. The magnesium I am getting is 480 mg. Do you think I need more?

motif Contributor
motif
Posted

I had fatigue and weakness since 3 months and slowly getting into depression too, but do you remember that line from the Galaxy Quest movie? "never give up never surrender" :)

BTW isn't that weird we have to search for alternative doctors and therapy? where are all the doctors?

imhungry Rookie
imhungry
Posted

It DOES suck, it IS a full time job, it does stink when you go to a potluck or a luncheon places and you can't eat a thing or very little if you brought it and are the first to dish your serving out andpeople ask you why you are not eating more and you have to explain over and over and over again.

I know how it is. Sounds like you are int he beginning of figuring this out at 2 months. Hang in there. Read everything you can on-line - I got tons of lists of safe foods, safe companies, safe restaurants, and peruse them as much as you can as you build your information bank in your brain.

You are learning a completely new thing - how to manage a chronic disease correctly takes lots of time and energy which you don't have right now. Stick with the foods you know are okay, and then expand slowly from there... Take it slow.

Wonka Apprentice
Wonka
Posted

I hear you. I have fibromyalgia, celiac and at the moment iron deficiency anemia and a wicked sore throat and cough. I have been tired for years but more so lately.

I'm curious about the malic acid for increasing stomach acid. I take it with my magnesium for my fibromyalgia but I have too much stomach acid (GERD). I'm wondering if I should switch to magnesium without malic acid. Anyone have any recommendations? As I am on an antidepressant that cause constipation and I am on iron supplements that have the same effect and I naturally have a sluggish bowel that causes constipation I am on 700 mg of magnesium to just to have a normal BM.

imhungry Rookie
imhungry
Posted

My GERD, for which I was even evaluated for surgery for, went away once I stopped dairy products... something to think about...

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

      You're right, doctors usually only test Vitamin D and B12. Both are really important, but they're not good indicators of deficiencies in the other B vitamins. Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer. The other B vitamins can only be stored for much shorter periods of time. Pyridoxine B 6 can...
    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
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      My only proof

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      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
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      - trents replied to Larzipan's topic in Related Issues & Disorders
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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    5. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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