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What Is Wrong?

minton

By minton
in Related Issues & Disorders

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minton Contributor
minton
Posted
  • Author

Yes, the candies are dyed. 3 different colors are listed in ingredients. That is a good idea and I will pay close attention to that... on a happier note, the canker sores are FINALLY healing and no new ones have appeared!

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minton Contributor
minton
Posted
  • Author

Great, I just got sick in school. According to school rules, they sent me home. This indigestion hasnow caused me to throw up! And I'm pretty sure I saw blood in that vomit. I have an appointment at 2:40 with my favorite doctor. I have a list of all the medicines I've taken in the last 4 weeks and my symptoms. And just watch, He will have a simple explanation for it all. He always does. My doctor is a genius.

rinne Apprentice
rinne
Posted

I'm glad you'll be seeing your doctor, I hope you get some answers and are feeling better soon. :)

minton Contributor
minton
Posted
  • Author

Doctor seemed a bit stumped to me, but he did help some and ordered some tests for more...

The rash is not DH or psoriasis in his opinion. He prescribed a cream, but the rash is going away on its own as well.

He thinks my balance is ear related and told me a few exercises to try. They seem to have helped. (My dad also returned the railings to the stairway finally...that was a 3 week paintjob!)

My energy is no better, but I have begun drinking Acai juice and it has allowed me to stay awake. I am watching for further improvement.

The doc ordered a CBC, thyroid levels, another test I don't remember, and, JUST IN CASE, a pregnancy test. We both agree we don't trust the pill or at home tests. Pregnancy is likely NOT the issue.

He gave me some ideas for my indigestion as well and told me we need to wait for the blood results for more information.

On a lighter note, my older, married friend and I were messing around yesterday (she is pregnant) with a fetal heartbeat monitor and other than hearing her baby's heartbeat (no heartbeat for ME!), we also found out that I have rusty hinges for joints! HAHAHA, actually that's a planned discussion next appointment... Some joints creaked horribly, others sounded like they popped out of place when I moved them. It was a bit scary.

ravenwoodglass Mentor
ravenwoodglass
Posted
Doctor seemed a bit stumped to me, but he did help some and ordered some tests for more...

The rash is not DH or psoriasis in his opinion. He prescribed a cream, but the rash is going away on its own as well.

He thinks my balance is ear related and told me a few exercises to try. They seem to have helped. (My dad also returned the railings to the stairway finally...that was a 3 week paintjob!)

My energy is no better, but I have begun drinking Acai juice and it has allowed me to stay awake. I am watching for further improvement.

The doc ordered a CBC, thyroid levels, another test I don't remember, and, JUST IN CASE, a pregnancy test. We both agree we don't trust the pill or at home tests. Pregnancy is likely NOT the issue.

He gave me some ideas for my indigestion as well and told me we need to wait for the blood results for more information.

On a lighter note, my older, married friend and I were messing around yesterday (she is pregnant) with a fetal heartbeat monitor and other than hearing her baby's heartbeat (no heartbeat for ME!), we also found out that I have rusty hinges for joints! HAHAHA, actually that's a planned discussion next appointment... Some joints creaked horribly, others sounded like they popped out of place when I moved them. It was a bit scary.

Did your doctor refer you to an ear, nose and throat doctor to confirm that your balance issues are ear related? There is a disorder called gluten ataxia that effects balance. If the ENT says your ears are fine you might want to see a neuro if this doesn't resolve. A neurologist can diagnose gluten ataxia with an MRI which will show distinct white spots similar to the ones in MS. Of course the only thing they can do is tell you to be gluten free and sometimes a referral to a physical therapist who can help with balance issues.

In addition a doctor usually can't tell just by looking if a rash is DH. If it should come back a visit to a derm and a biopsy of the tissue next to the sores will tell you for sure.

Don't be too concerned about the creaky joints that you heard with the scope. You have a fluid inside your joints that lubricates them and will sometimes cause a popping noise. Like when someone cracks their knuckles. Go ahead and check it out but it is likley to be pretty normal.

I hope you start to feel better soon.

minton Contributor
minton
Posted
  • Author

He did not refer me to any doctors, but I will ask him next time about that. He did not biopsy the rash at all but he looked at the spots and told me that he has never seen DH or psoriasis act the way this rash has. The rash had begun to heal when he saw it and he said if it wasn't gone on its own or with the cream we would investigate further. So far no new spots!

Apparently the test he ordered that I don't recall included a vitamin D test (i think it was called a complete chem or something?) but they have to send the D test out to california and said it will take a minimum of ten days to recieve the results. They said all of the test results will be sent to them when all the tests are complete. And they will call me when they have the results. That will be February 2nd at the earliest. *waits anxiously* I will post the results as soon as I get them!

minton Contributor
minton
Posted
  • Author

Wow... test results cvame back. All my levels were normal except two. My potassium was low. it was 3.7 when it should be 3.8 at minimum (but its always been 3.7). And my vitamin D levels were 33, apparently my doctor wants them at 50. So tomorrow I am going hunting for a supplement (he wrote down the dose for me). And, since I mentioned it before, I should tell you all the blood pregnancy test was negative. Yay!

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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