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Support Group Florida?

Costa Rica Aunt

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Costa Rica Aunt Newbie
Costa Rica Aunt
Posted

Hi, I currently live in Costa Rica and my niece was recently diagnosed with celiac disease. We happen to have relatives currently living in Kendall, FL, and I was wondering if there was a support group we can contact and can help us out? My sister in law is traveling to Miami during the fist week of March and we wanted to take the opportunity to look for stores that offered gluten free products (since currently in Costa Rica the options are very limited) in the nearby area? Anybody can help us out?

Thanks!

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Lisa Mentor
Lisa
Posted
Hi, I currently live in Costa Rica and my niece was recently diagnosed with celiac disease. We happen to have relatives currently living in Kendall, FL, and I was wondering if there was a support group we can contact and can help us out? My sister in law is traveling to Miami during the fist week of March and we wanted to take the opportunity to look for stores that offered gluten free products (since currently in Costa Rica the options are very limited) in the nearby area? Anybody can help us out?

Thanks!

Open Original Shared Link

Here is a start. :D

Good luck

mom.on.the.go Newbie
mom.on.the.go
Posted

Hi -- I am in South Florida... For the largest variety concentrated in one place there is Whole Foods. There is one in Coral Gables which is somewhat close to Kendall -- 6701 Red Road Coral Gables, FL 33143 USA

BUT... I find that Publix (our local supermarket) and even SuperTarget have a lot of the same items for a lot less $$$. It just takes more time in Publix and Target to find them.

If your niece is travelling with your sister they may want to go out to eat at Fogo de Chao in South Beach. I haven't been there yet but I understand almost the entire menu -- including the bread onteh tables is gluten free. Open Original Shared Link

I would also take advantage of it being close to Passover and hit a couple kosher marts (they are everywhere) and see what they have. Explain to the clerk you need both wheat, barley, etc as well as matzo free -- tell them you want

  • 4 months later...
Marlene May Newbie
Marlene May
Posted
Open Original Shared Link

Here is a start. :D

Good luck

Marlene May Newbie
Marlene May
Posted

Hi:

There is good news for you! Under the direction of Natalie Romero, a nutritionist at Baptist, who also has Celiac Disease, a support group has started in the Kendall area called Gluten Free South Florida. We held our first meeting on June 1st, and our second meeting will be on Monday, July 6th.

Will meet the first Monday of every month at 7-9:00 p.m.

Women

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  • Recent Activity

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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