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Newly Diagnosed And My Whole Life Ahead Of Me

butterflygirl

By butterflygirl
in Coping with Celiac Disease

Recommended Posts

Camillego12 Newbie
Camillego12
Posted

I am so glad to hear that I am not alone in this transition. I was sick and in unbearable pain for all 4 years of college. After one doctor finally took the time to help me, colonoscopy, upper endoscopy, and blood work, meetings with specialists, I have become healthy again.... Mostly. I had 2 good years and suddenly started feeling off again. One liver biposy later, and I find I also have auto immune hepatitis. THE FUN NEVER ENDS! 

 

It has been a long long road, but I am on the journey to become a gluten free, happy and healthy woman. My significant other has stayed with me through it all and as soon as I can pay off my medical bill debt, we will be married. :)

 

Has anyone else dealt with multiple autoimmune problems? How have you handled the bills if you didnt have insurance, or had crappy insurance?

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Gemini Experienced
Gemini
Posted

Yes, I have 3 other AI diseases on top of Celiac but all of mine have either stabilized or my symptoms were greatly reduced by following a strict gluten-free diet.....which is very good because I am not a fan of doctors and would rather manage my AI problems by diet and exercise.  I have been gluten-free for 10 years and I am not the same person I was pre-diagnosis so that goes to show how much the gluten-free diet can keep things under control.  There is no reason to believe that you cannot achieve this also, if you follow the diet as you should.  Liver issues can resolve on their own by following the diet.  The liver becomes especially irritated by gluten, if you have Celiac Disease.  I had elevated liver enzymes pre-diagnosis and they resolved on the diet.

 

I have always worked so have had good health insurance for when I needed it.  As far as racking up medical bills, pricing on tests can be negotiated, if you live in the US. Tell them you want the best price possible, if you don't have insurance.  I would also only pay them what you can afford comfortably because as long as you are making payments, they cannot do anything about it.  I think everyone should pay their debt off because it is all about personal responsibility but if it takes a bit longer, then so be it.  They'll get their money eventually.  ;)

 

Glad you are feeling better!

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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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