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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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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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