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Dangerkitten

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Dangerkitten Newbie
Dangerkitten
Posted

Hi,

I'm new here and decided it's time to post. I've been lurking and reading for a few months now.

I have multiple forms of arthritis, fibromyalgia, multiple chemical sensitivity, severe fibroid issues which has had me anemic for the past couple of years (so I'm on perscription iron supplementation). I also have restless leg syndrome (take Carnitore for that and Ultram when it's bad). I have healing issues because of the autoimmune problems so I fear surgery greatly. Generally, I've been a pretty sick puppy for the past 25+ years.

A little over three months ago I read a book called "The Inflammation Syndrome" which led me to cut wheat out of my diet. Some searching on the net brought me to this site and I decided to go gluten free just to see if it helped. Realizing that I've had explosive diarreah for most of my life, with rashes on my hands since childhood I decided to bring up gluten intollerance to my rheumatologist. She had such a look of shock on her face and said, "Why haven't we tested you for this?" Unfortunately, before I was tested, I cut out all gluten 2 months before, which seems to have skewed some of the celiac panel. But one of the test showed I had quite a bit of gluten antibodies still circulating my system. She concluded that I should remain on the diet and further testing was unneccesary.

One month after starting the diet, most of my pain went away. My RLS disapeared. The horrible intestinal cramping and explosions ceased ...gone! Now that it's been a full 3 months without any pain I started to feel pretty confident that I could keep this thing controlled. Well.....Until I had dinner at my sister-in-laws on Easter. Sigh....I don't know what had gluten in it. I tried so hard to be vigilant; without success. I got home and steadilly declined. The explosive "D" returned for hours. The next day I slept 16hours and had to take Ultram every 5 hours just to control the pain. Used my heating pad on my legs just so I could stand it till I got unconscious. It's calming down again, but I swear, I'm not going to take any chances on food anymore. After 3 months of peace in my life, returning to gluten hell was very unwelcome.

I'm still in shock that all these years gluten was my problem. My general practitioner now thinks the arthritis is secondary to the celiac. I'm starting to wonder about that myself.

Anyway, thanks for this board. You helped me to figure things out and go ahead with the diet on a hunch.

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doordb Newbie
doordb
Posted

[i too have just become a member. I have been sick for also 25+ years maybe even double that and just didn't know it. I have been gluten free since Nov 2004 or at least tried to be. I have now eaten something wrong twice and could not believe the reaction of what I thought used to be normal...

KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome to the board both of you :D

This is a great place for support and to ask any questions B)

Look forward to talking with both of you :D

Canadian Karen Community Regular
Canadian Karen
Posted

Hi and welcome to both of you!! :D

There are a bunch of really great people on this board who are always willing to answer any questions you might have. Our motto here is "No question is too stupid to ask....." We've all been there...

Glad you found us! ;)

Karen

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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

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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.

      By trents · Posted

      Contact them.
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