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Celiac Here From Long Island, Ny..


GFKryptonian

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GFKryptonian Newbie

Hey yall any of you from NY, or Long Island? I was diagnosed about 4.5 years ago with celiac disease. I am currently attending school in Providence, Rhode Island. I'd love to meet anyone, especially from the NY or Providence, RI area. I have never met anyone face to face with celiac ;[. My aim is mikestein00 or my email is mls794@jwu.edu - please message me anytime I love meetin people!

  • 7 months later...

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laurichick Newbie

hey there!

I was just diagnosed about 3 months ago! I live on li too!

The local celiac group is having a vendor fair in june, i just posted info about it Open Original Shared Link

you should check it out! and also the celiac group meets the 1st tuesday of the month, then plan meals out and pretty much hang out and eat gluten-free stuff together. very cool people!

if you want info on that lemme know!

Lauri

my aim> vaguelyvogue

  • 1 year later...
mouth Enthusiast
Hey yall any of you from NY, or Long Island? I was diagnosed about 4.5 years ago with celiac disease. I am currently attending school in Providence, Rhode Island. I'd love to meet anyone, especially from the NY or Providence, RI area. I have never met anyone face to face with celiac ;[. My aim is mikestein00 or my email is mls794@jwu.edu - please message me anytime I love meetin people!

Long island here too..

Dandelion Contributor

Yay! Other Long Islanders!!!!! I'm from Nassau County. Where are you guys from?

whitney728 Newbie

yay long island...suffolk (but school in nyc) here

darlindeb25 Collaborator

East Islip--Suffolk County on the south shore. Of course, I am not a native islander, I am a native Michiganian, but I do love it here. Michigan is a beautiful state and the Great Lakes are beautiful, but they can't beat the beauty of our Lady, the ocean!!!!!

Silly Yak Pete Rookie

Long Beach Long Island here!


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mouth Enthusiast
Yay! Other Long Islanders!!!!! I'm from Nassau County. Where are you guys from?

NASSAU COUNTY!!!!!!!!!!! LEVITTOWN

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    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
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