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Alison R

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Alison R Rookie
Alison R
Posted

I'm a 31 yr old Texas girl, who like many others I see here has not been a stranger in the doctor's office. I was diagnosed with "benign familial tremor disorder" in 1998, I couldn't tolerate the medication they gave me and I wasn't willing to let the neurologist shove two long metal rods into my brain and a battery pack in my chest, so I went off caffeine and have just dealt with the shaking for mare than ten years. At 20 I was hospitalized due to an allergic reaction to soy, so no soy since 1999. My health seemed okay......until I got pregnant soon after I turned thirty.

After a second miscarriage last year the dr. found a 5.5 cm fibroid. My now ex-obgyn wanted to immediately do a hysterectomy. I said no. Removed meat with antibiotics and hormones in August of 2010, and my fibroid has shrunk to less than 2 cm as of November.

I managed get away without surgery again, but other things have not been the same: I have lived with almost no energy....sometimes sleeping 18 hours a day (Mom thought it was depression...but I don't feel depressed just exhausted), I've been forgetting things and have to write lists for everything, and not only have my tremors gotten worse, but I have been having mild seizures and seeing spots several times a day. Doctors have been clueless and have just tried to treat symptoms....but nothing has worked.

I have always had minor GI issues and bloating, but still nobody had connected it to possible celiac, in fact I had never even heard of it until December 27, 2010.

My fiance has had his own issues, an itchy skin rash on his thighs for over 5 months, foul gas most of his life, and recurring IBS-like issues to name a few. We spent Christmas day with his family and I knew he would have some issues because none of the food was healthy.....everything was breaded, veggies were nowhere to be found, but I didn't expect him to be stuck in the bathroom for several days and missing work. He thought it was a virus, I thought otherwise and did a google search. Thank goodness for google! I wanted him to go get a celiac panel done immediately....he's dragging his feet on that, but we went gluten free anyways on Jan 4th.

In just over a week we can both notice a difference. Not only has his rash started to subside, his gas and other intestinal issues have gotten much better, AND I'm feeling quite a bit better too!

I only went gluten free to be supportive of him. but my energy is rising, my sluggish digestive system is getting more regular, AND I haven't had any seizures in two days, I'm not shaking, and I'm not seeing spots. Maybe it's too early to say these things are gone for good, but I'm not waiting for a diagnosis....removing gluten has helped too much. I'm not saying I'm back to the old me (not even near it), but I'm hoping to get back to working full time soon.....and who knows - maybe I'll even be able to start running again in the next few months. This year is beginning to look bright for us and I hope to be a healthy, all be it caffeine-free, gluten-free, soy-free, bride later this year. :)

If anyone has great gluten-free cake recipes, I'd love you to pm them to me.....I am now planning to make my own gluten free wedding cupcakes....I'd like our family to know that gluten free can taste good. (Especially since I think a handful of them are probably celiacs themselves.)

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mommida Enthusiast
mommida
Posted

I really love The Allergen-Free Baker's Handbook by Cybele Pascal, How to bake without gluten, wheat, dairy, eggs, soy, peanuts, tree nuts and sesame. The cupcakes are awesome!

If you are going to make them gluten free, why not make them free of most food allergens for everybody to enjoy! Even vegans!

Congratulations!

Alison R Rookie
Alison R
Posted
  • Author

Thank you. I will have to look into that one.

My mother, trying to be supportive, went out and bought just about every gluten free flour she could find this week. So right now I have nine different packages of flour and two packages of xanthan gum and a package of guar gum in my pantry (along with several mixes and a small stash of pasta) for a family of two. I better get baking.....don't want this to all go to waste. :(

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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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