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Calling All "old Timers"

DingoGirl

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CMCM Rising Star
CMCM
Posted
I will be gluten free for 5 years in July. Before going gluten free, I had panic attacks, borderline agoraphobia, anticipatory anxiety plus diarrhea nearly every night, joint problems, stomach cramping nearly all the time. The one food I thought was ok for me to eat, toast, turned out to be one of my worst villians. I was very overweight, being one of the celiacs that didn't lose. After I went gluten free, within 3 months I was off the 40 mg of paxil I had been taking for years, the stomach cramping was reduced greatly--diarrhea very rarely. The thing that meant the most to me, I was able to drive 800 miles to meet my sweetheart--there was a day when 20 miles was out of the question. Now I live in New York, I work fulltime, extremely rare for me to have panic attacks and I really do feel much better. I won't tell you that things are great. I have developed an intolerance to soy, corn, and tomatoes. From my 25 years, at least, of no diagnosis, I now have peripheral neuropathy throughout my entire body and I did go through early menopause, which is fine with me. Just as someone else said, my hair grows so fast now too. My life is so much better now, not perfect, but so much better. Deb

Your HAIR grows faster now??? I haven't heard that before! Interesting....

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MallysMama Explorer
MallysMama
Posted

Danikali,

I'd love to encourage you!! However, if you read many of my posts you'll find that I'm not a very "good" celiac...so don't follow my example! :) I've had celiac sprue for 21 years (I'm 22 now). I don't remember much of the hard times. I do remember being so left out in school. Whenever kids had birthdays and they'd bring cupcakes - I could never eat one. (My mom always gave me a "special" treat when I got home though.) And I always had to bring a lunch from home - to this day I won't eat yogurt because I had it so many days in high school. I remember one time when my family went camping - my mom had made pancakes (a couple gluten-free for me and regular for the rest of the family) and was warming them up on the little portable grill thing...and she accidently mixed one of mine with one of my dad's. I was soooo sick that whole day. It was awful! that had to be atleast 10 years ago though.

So, now for the encouraging! It's been easier for me because I don't "know any different" with a lot of things. I think bread is disgusting! So I can't really sympathize with having to get rid of foods that you once loved. But I can tell you that it gets easier - you find your favorites and you stick to them! I'm always looking for something new out on the market that's gluten-free. As for stomach pains - yes, they will lessen over time (I believe anyway). I have found lately that I can cheat with what I eat and not have immediate painful effects. I have a 19 mo. old daughter and I quite frequently sample what she's munching on (like goldfish crackers)....and I think my BM's have stayed pretty normal still. I don't think everyone will be able to do that - after all it has been 21 years for me. But, I am living proof that it's possible to really LIVE and have celiac at the same time. (I used to never ever ever cheat...and I was able find things I loved and stay healthy.) Just be careful but get creative! Don't be afraid to try new (but safe) foods...and hopefully your intollerances/allergy list doesn't grow any more. (I'm only allergic to gluten - so I guess I'm lucky... though until reading all the posts I never realized it.) Good luck - and don't get too discouraged - everyone is here to help when needed!

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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! 
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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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