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Trying2GetHelp

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Trying2GetHelp Newbie

After searching for a year (in particular) for problems that seemed to flare after a life-time of one-at-a-time symptoms, my newest specialist in an endocronologist who has already determined that my Vit D level is basically non-existant, I have weakness in my left leg and foot, I am very likely suffering from some sort of thyroid deficiency, celiac disease (?), a possible pituary problem, and a whole host of other things (I didn't know there WERE other things), that I have not complained about.

I did notice that, for the last two days, everytime I eat bread, I end up in the bathroom. I've always attributed it to an allergy to milk fat (all dairy, including pizza), but lately I had noticed - but not enough - that it seemed to be happening alot, no matter what I ate.

Tonight, I have a symptom that I've had many times before, but no one has been able to help me. From research on this site, I think it might be related to this forum.

1. VERY itchy fingers (one to start)

2. Hands get BRIGHT red and swollen

3. Index finger(s) appear to get painful bumps just at the first crease -- where your laces would lie when you tie your shoe. Those bumps start to itch, then get painful for a few days, then go back down to normal.

4. Sometimes RED, SWOLLEN hands take on a "waxy" appearance -- water won't penetrate. (This hasn't happened in quite a while, but when it does, it happens to my feet, too .....)

Are we actually ON TO something?


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nvsmom Community Regular

I haven't experienced that symptom myself, but perhaps someone else will chime in.

I wanted to say good luck with the celiac and thyroid testing, and make sure you keep eating gluten until your testing is done.

JessF Rookie

Hi there,

I have some wierd finger/hand symptoms too. My palms are red also. My hands go from being cold and wrinkled to warm and swollen like you describe with a waxy type appearance. They hurt and are very sensitive too. I am hoping this is celiac which I have my endoscopy in a week to confirm the diagnosis. I have also been borderline hypothyroid after having thyroiditis two years ago. I am waiting on the celiac diagnosis and then will get my bloodwork done again for hypoT to see if I need to be on medications for that. Good luck!

Jess

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    • knitty kitty
      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
      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
      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
      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
      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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