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Symptoms And Waiting For My Test Back!

MrsC

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MrsC Rookie
MrsC
Posted

Hi there, not sure where to start...

I am waiting for blood tests back that were drawn yesterday for Celiac Disease. Since my baby was born last year in June these are some of the symptoms that I have been having:

Muscle Pain

Muscle Weakness

Fatigue/Exhaustion

Pins and Needles in Arms and Legs

Burning in Shoulders and Hips

Extreme Joint Pain at Night

Really BAD Rashes that are SOOO ITCHY

Dry Skin

Frequent Bowel Movements every day

Painful Belly Gas

Here is what I HAVE been diagnosed with: Thyroiditis (At first Hyperthyroid, then Hypothyroid. So Now I am on Synthroid everyday.)

I have gotten the run-around from my bloodwork for so many things being negative: Lupus, Lyme Disease, Rhuemetoid Arthritis, Sed Rate, ANA, etc.

I have also been to the Neurologist every month since January and had Brain MRI scans, and a negative EMG study on the arms! I can't take this anymore. My primary doctor and neurologist both are basically stumped.

My sister is an Emergency Medican Technician on the ambulance here and suggested that I see a doctor in the ER that she knows is quite good - he is the one that suggested the tests for Celiac Disease, and also put me on Prednisone to see if it would help with the pain that I am in and clear up any inflammation (that's not working by the way!) Can that alter my blood test? I really hope it doesn't.

My primary care doctor appointment after the ER visit was when she told me to go on gluten free while we wait for the bloodwork. So I started this morning.

Anyway - thanks for reading if you still are - I know this was long....Does this sound like Celiac Disease to you?? Any thoughts appreciated! Thanks.

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MrsC Rookie
MrsC
Posted
  • Author

I should also add that when I was 6 months pregnant, my father died of a sudden heart attack at 57 - I went into pre-term labor 4 weeks later, and was on bedrest until my son was born via emergency C-section in June.

Could stress have brought out the storm here?

mouse Enthusiast
mouse
Posted

Yes, stress can trigger the storm. So can operations. It sounds like it could be Celiac. I am glad that you found someone who would run the tests on you. Let us know how the diet goes for you. Remember you need your own separate toaster and do not cross contaminate. No letting the husband put his knife in the jar several times while putting something on his bread. The diet is not bad once you get the hang of it.

nettiebeads Apprentice
nettiebeads
Posted
I should also add that when I was 6 months pregnant, my father died of a sudden heart attack at 57 - I went into pre-term labor 4 weeks later, and was on bedrest until my son was born via emergency C-section in June.

Could stress have brought out the storm here?

Oh yeah - mine showed up after a really really nasty sinus infection. And lots of everyday stress. Anyhow, how are you while gluten-free? Some show improvements almost immediately. You might want to exclude dairy also, for now. If it is celiac, then the villi are damaged and that makes it really hard to digest dairy. You'll be able to reintroduce it in about three months. As Armetta said, watch for cross-contamination. That seems to be the bigger issue than the diet itself in trying to stay healthy. Keep us posted!

Annette

MrsC Rookie
MrsC
Posted
  • Author

Thanks for the replies!

I have been on gluten free now for 2 days and I actually feel a slight improvement in my energy. I hope it all gets better from here!

nettiebeads Apprentice
nettiebeads
Posted
Thanks for the replies!

I have been on gluten free now for 2 days and I actually feel a slight improvement in my energy. I hope it all gets better from here!

Glad to hear that! Don't mean to scare you, but you need to check toiletries (nasty old wheat starch and wheat germ oil and aveno (oats)) run rampant there. Also any otc - I was being healthy, I thought, by taking vitamins. Turned out when I finally read the fine print on the label that they had gluten in them! Sheesh! Don't be surprised if it takes you forever now to do the grocery shopping. All that label reading.

Anyhow, keep up the good work and here's to more improvement!

Annette

MrsC Rookie
MrsC
Posted
  • Author

I have been starving between meals since going gluten free on Weds. Is that normal?

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Lister Rising Star
Lister
Posted

yeah its pretty nomal what i had to do is instead of eating 3 meals a day i eat 6 small meals a day, well right now im only eating 2ice a day but thats just because i am not getting hungry, but either eat small meals or snack on lite foods like carrots

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

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      @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! 
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    • 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.

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      Contact them.
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