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Need To Find Celiacs In My Area


dark wolf

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dark wolf Newbie

Hello, I am a beginner at computers I can not figure out how to use this space. All I wanted is to be able to meet people in my area with celiac. I would just like to be able to talk or make friends with someone who understands. Non-celiacas think they understand or the opposite & tell me I use as an excuse to not participate. If any one is willing to expain this site and how it works. Can you accually type back and forth with people?? Please e-mail me @ crt491@yahoo.com I am in central florida

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

Thanks.


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Jamilah Rookie

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

No problem eating w/ someone eating gluten---it doen't cc to that extent. Wooden and plastic dishes can retain gluten, but other dishes/glasses are fine. It's good to be careful, but you can't live in a bubble.

Cheers---

Vrazel Newbie
Hello, I am a beginner at computers I can not figure out how to use this space. All I wanted is to be able to meet people in my area with celiac. I would just like to be able to talk or make friends with someone who understands. Non-celiacas think they understand or the opposite & tell me I use as an excuse to not participate. If any one is willing to expain this site and how it works. Can you accually type back and forth with people?? Please e-mail me @ crt491@yahoo.com I am in central florida

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

Thanks.

Hello. I do not know how to use this either but I live in P'cola, Florida and was just diagnosed with celiac. My daughter was diagnosed first in Atlanta and the doctor said I must be the carrier so I went to Atlanta and had the biopsy and that confirmed it. I am also a diabetic. This is very hard for me. My daughter has stuck to the gluten free diet and it has made the biggest difference in her life. I have been very sick for a long time, diagnosed with fibromyalgia, crohn's disease, asthma, acid reflux, iron deficient anemic, B12 is low, been losing hair, gained weight, have sleep aepnea, etc. My doctors in Pensacola told me I did not have celiac. I kept losing blood, staying tired and I was very depressed. The doctors in Atlanta have helped me. I am hoping to find a support group in Pensacola, Florida, or nearby. I am just newly diagnosed and don't quite understand how easy it is to cross contaminate. My son and daughter in law do not feel celiac is anything to worry about. They feel I should worry more about taking care of my diabetes.

taylor- Rookie

Hey there...there are a ton of people from florida here! I'm from Bradenton (below Tampa) but Im in Tallahassee now for school.

You should definitly look into a support group! https://www.celiac.com/st_prod.html?p_prodid=310

Even though this place could pretty much answer any questions you might have...its so great to have those people close to home. if you have any questions I would be happy to help..if i can..my email is tbv07@fsu.edu

Good luck!

  • 3 weeks later...
ackdavis Rookie

First, it's tough feeling isolated, nobody understands your basics to live freely. There is a lot of help on the Internet. And in person. There are lots of us who do well gluten-free and who pitch in to help actively.

Do try Open Original Shared Link to find a group near you for information and support. There are others: GIG, CSA so snoop around until you find what fits you best. Check out Open Original Shared Link and print out what you need to inform your friends? - gotta wonder if they are friends saying things like that - and family. Gluten Free Works site Open Original Shared Link has real simple Diet Cards which you can show off to anyone, to help them understand. Since they are sompact and preprinted, they look official but more importantly, they are accurate. Celiac sites for Travel have cards you can download but they aren't as detailed.

You know you are doing the right thing in sticking to gluten-free, for your well-being. I find I can do much more with a positive attitude and a smile than when I sound negative so I try to always approach the unknowing as if I am helping them. Seems to work for me.

Try Open Original Shared Link and celiac chicks site too. They have lots to say in a good manner, all that helps gluten-free and Celiacs everywhere and with a social context.

Best of fortune! The more we get our word out about how easy it it to mess up a simple plate, the better for you and for all of us! Our eats are delicious! Others should have as much variety in their diets as we do.

B)

Hello, I am a beginner at computers I can not figure out how to use this space. All I wanted is to be able to meet people in my area with celiac. I would just like to be able to talk or make friends with someone who understands. Non-celiacas think they understand or the opposite & tell me I use as an excuse to not participate. If any one is willing to expain this site and how it works. Can you accually type back and forth with people?? Please e-mail me @ crt491@yahoo.com I am in central florida

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

Thanks.

mamaw Community Regular

Hello & welcome

First off I'm not from Florida but you can learn so much from this site. I'm not good at this computer thing either so don't let that stop you...

I think you are asking how to navigate around this site? If you wish to answer a thread or message just hit the relpy button & post you response.If you want to post a new question , hit new topic in the section that best fits your question. Ie: a recipe ? would be placed in the cooking section.

You also will see an option choice, if you would like to be notified when someone answers your ? just click on immediate notification & it will let you know someone has answered.

There are many topics as Doctors, Cooking,& so on then when you click on a topic all the ???'s appear & you can read the ones that interest you. They go on forever.

I will tell you that you will learn more right here than most doctors could ever tell you. The recipes are wonderful & alot of sharing & caring takes place here.

I hope this was what you were asking.....

Please ask questions because everyone here will help you.....

blessings

mamaw

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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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