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Celiac Button Would Be Helpful


YankeeDB

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YankeeDB Contributor

It occurred to me that an organization might sell a fund-raising button or pin that we could wear in the market to ferret out other Celiacs and generally raise awareness. Something like "Support Celiac Disease Research" or something catchier.


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angel-jd1 Community Regular

They do exist. They are a small green ribbon pin (like the yellow "support the troops) . They cost $5 a pin. They are put out by the University of Chicago Hospital and Northeast Ohio Celiac Support Group. I had inquired about them back in May, so not sure if they still have a supply or not, I am sure you could contact them to find out. Here is the info that I got back in May.

Jessica,

We created the celiac disease awareness pin with the Northeast Ohio Celiac Support Group to raise awareness. All proceeds of pins purchased from us will go to support the mission of our organization, which is to raise diagnosis rates for celiac disease in the US through professional and patient education.

Anyone interested in a pin should send a check to:

University of Chicago Celiac Disease Program

5839 S. Maryland Avenue, MC4065, Room C-491

Chicago, IL. 60637

For $5/ per pin plus $.60 postage for an order of 1-10 pins (more than 10, postage is $1.00)

Thanks!

Michelle

mmelinro@peds.bsd.uchicago.edu

lovegrov Collaborator

Shirts and tote bags here: Open Original Shared Link

richard

MySuicidalTurtle Enthusiast

My Mother bought me a "Wheat Sucks" shirt which I sometimes wear. My Aunt and Grandmother alos bought (different) Celaic shirts which they wear often.

celiac3270 Collaborator
My Mother bought me a "Wheat Sucks" shirt which I sometimes wear. My Aunt and Grandmother alos bought (different) Celaic shirts which they wear often.

LOL :lol:

angel-jd1 Community Regular

I forgot about this one.......... it is called Angelic Grooves. Open Original Shared Link The lady creates bracelets, necklaces, and keychains out of crystals and beads. 20% of the profits go to Celiac Research. The bracelet runs 35$, necklace is 37$, and keychain is 10.99.

This is what the website says :

Celiac Disease Awareness

Celiac disease , also known as gluten intolerance, is a genetic disorder that affects 1 in 133 Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, and malnutrition, to latent symptoms such as isolated nutrient deficiencies but no gastrointestinal symptoms. Those affected suffer damage to the villi (shortening and villous flattening) of the intestines, when they eat specific food-grain antigens, (toxic amino acid sequences) that are found in wheat, rye, and barley. Oats have traditionally been considered to be toxic to people suffering from Celiac Disease but recent scientific studies have shown otherwise.

Both of my daughters, Halle,(6) and McKenze (3) have Celiac Disease.  Now I have been tested also and have confirmed that I have it.  For this reason I have made the Celiac Disease Awareness jewelry (green catseye with peridot Swarvoski Crystals that represent the celiac color) with an awareness ribbon for Celiac Disease. I have chosen a few fundraisers to donate 20% of profits for Celiac Disease.

20% will go to the University of Maryland Center of Celiac Research       

MySuicidalTurtle Enthusiast

Wow, I am loking at her stuff right now!


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Carriefaith Enthusiast
The lady creates bracelets, necklaces, and keychains out of crystals and beads. 20% of the profits go to Celiac Research.

I think that's a great idea!

  • 5 weeks later...
Sada Newbie

Hi I am new to this board... I have been navigating around today and saw this and thought I should post! I ordered some and it is beautiful! I ordered last June and hardly take it off!!! I get so many compliments on my bracelet and it is really great to raise awareness. I just ordered again for my family and saw they are having a 15 % off the bracelets until the middle of Feburary. Just thought I would pass that around. Look forward to meeting everyone!

Sada

Sada Newbie

Edit: OOOPS I messed up and did 2 posts thinking I didn't get the other post done. SORRY! :) New and learning about this! :)

Hi!

I am new here to this board and just thought I would post here!

I love her jewelry. I have had my bracelet since June and wear it all the time! It is beautiul and helps raise awareness! I have compliments on it daily. I just put in another order for my family to have one. The bracelets are 15% off right now until the middle of Feb. Just thought I would post this information!!! :)

I look forward to meeting everyone here.

Sada

  • 1 month later...
Guest ~wAvE WeT sAnD~

LOL! Wheat sucks! That is fantastic! Hopefully I can make it an LJ icon. ;)

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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