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Lisa

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Lisa Mentor

To all of those who read, learn and are searching...please feel free to join us. It's affirming to know that you are not alone, to find others who can help trouble-shoot your concerns, get assistance from those who can point you in a direction or just to seek comfort in those who have walked in your shoes.

Not all answers can be found here, but it's a good beginning.

Join us! :D


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Financialman Newbie

Hi Lisa,

I am brand new to this forum but not to Celiac disease. I finally decided to get involved in a Celiac forum and I am totally amazed with how many people are involved in this one. I hope to be able to add my voice and help all the newbie Celiac members.

Lisa Mentor

Hi Lisa,

I am brand new to this forum but not to Celiac disease. I finally decided to get involved in a Celiac forum and I am totally amazed with how many people are involved in this one. I hope to be able to add my voice and help all the newbie Celiac members.

GREAT! Looking forward to it! :D

jerseyangel Proficient

Welcome Financialman! :D

  • 3 weeks later...
mom2three23 Newbie

I was recently diagnosed and am just trying to get my bearings and came across this site! I am so happy I could cry . . . I have so many questions, and yet feel I'm so 'green' I'm not even sure what questions I should be asking. Short of a diagnsis - of which I basically handed to the doctors after years of being sick, at times quite seriously - the doctors haven't been much help at all. So I have become an internet junkie! SO happy to have "found" you!

Lisa Mentor

I was recently diagnosed and am just trying to get my bearings and came across this site! I am so happy I could cry . . . I have so many questions, and yet feel I'm so 'green' I'm not even sure what questions I should be asking. Short of a diagnsis - of which I basically handed to the doctors after years of being sick, at times quite seriously - the doctors haven't been much help at all. So I have become an internet junkie! SO happy to have "found" you!

WELCOME!!!

No matter where you have been, there is someone here that has walked in your shoes. :)

So glad you have joined us.

Judy3 Contributor

I've been on this site for a few months since my diagnosis and you guys have been very helpful and friendly. I'm doing excellent now on the gluten free diet or 'the celiac diet' as my gastroenterologist refers to it. Welcome to the new people, we need all the voices we can get so this isn't so difficult.

:D


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Bookworm25 Newbie

Hi,

I have always been coeliac so in one way it is good as I do not know what I am missing, if indeed I am missing anything at all! I do however get a twinge of jealousy as my friends order anything they like from restaurants and their food shopping trips are quicker as they do not have to check all the ingredients but it certainly could be worse!

I have only recently joined this site and already there is a lot of help on here!

Natasha

Financialman Newbie

Hello to everyone. It looks like community is growing,slowly, but growing. I have been spending time looking around for the last two weeks or so and there is a wealth of information here. We need to recommend this forum to all our Celiac friends. :)

Financialman Newbie

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

kareng Grand Master

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

She talks a lot ( like me) :ph34r:

psawyer Proficient

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

Over 6,600 of them are in one topic. :blink:

jerseyangel Proficient

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

:lol: As my friends have pointed out (and thank you both so much...Peter with statistics, even... :blink: )-- I do like to talk....but silly-ness aside, back in 2005 I had been undiagnosed and sick for over 20 years before finding out what the trouble was. By then, I had been told it was all in my head for so long and kept so much to myself about dealing with the symptoms that when I stumbled onto this site while looking up an ingredient and saw people actually talking about this--I wanted to be a part of it.

The only thing was--at that time I was not computer literate at all (a slight problem :D ) --I was using the kids' computer to try to look up that ingredient and when I finally came up for air after reading practically the whole forum--I had to ask my son how to register and post. :P

Needless to say, I caught on pretty quickly--which I guess is where the 18,000+ posts come in. :rolleyes: I will forever be grateful for the camaraderie, support, information, and finally friendship I found here so I stay on and try to make myself useful in between the fun.

mushroom Proficient

Over 6,600 of them are in one topic. :blink:

Dang! What other statistics can you come up with?? :o

Financialman Newbie

Thanks for the response Jerseyangel and your friends psawyer and kareng. Not to ignore psawyer (4,000+ posts is also a lot) but kareng has over 3,000 posts in little over a year which is also amazing. What's your story?:D

kareng Grand Master

Thanks for the response Jerseyangel and your friends psawyer and kareng. Not to ignore psawyer (4,000+ posts is also a lot) but kareng has over 3,000 posts in little over a year which is also amazing. What's your story?:D

I'm trying to beat Patti (Jerseyangel)! Or as some would say - I talk too much!

lexusca Rookie

Hey there I was daignosed this morning and found this forum, any and all info I can get is great. Glad there is a place out there for this

jerseyangel Proficient

Hey there I was daignosed this morning and found this forum, any and all info I can get is great. Glad there is a place out there for this

Welcome lexusca, and be sure to let us know how we can help :)

RoseM Newbie

Hi. This is my first post. I'm so excited to have found this forum! :) I was actually diagnosed about a year and a half ago. Ever since then I've sorta been "going it alone" as far as Celiac and the gluten free diet goes. (I mean, I do have a really supportive extended family but I don't get to see them very often. In my day-to-day life, I don't know anyone with Celiac Disease or anyone on the diet.) So it's really awesome to have found a whole community of people who understand. And there's so much information here. I wish I'd found it sooner. :)

mushroom Proficient

Glad you decided to join us, Rose. Welcome, and let us know if there is anything we can do for you.

kareng Grand Master

Hi Rose!

  • 3 weeks later...
Tutti Frutti Newbie

Hi everyone :) I am so happy to have found your forum. For months I have been praying to find out what is "wrong" with me. I do not know anyone with Celiac Disease so I have found many of your posts to be helpful. I have not been diagnosed, I am a student and only have the basic student insurance which means that I can only go to the clinic on campus.

I have experienced muscle twitching, pain and numbness. After eating a meal I get a fever then chills. One day I am constipated and the next day I have dia.... I have lost muscle mass and my hair has been falling out. I feel tired but I can't sleep.

When I eat dairy or soy I get sick and break out so I suspect that gluten could be a problem too. All of this has wrecked my self esteem because I appear to be a pessimistic,crazy person with an eating disorder. Everyone thinks that I must be making up my symptoms.

I am eliminating gluten from my diet. This is the first week and I already notice no flushing or fevers after eating.

Thanks again :)

  • 2 weeks later...
Terri O Rookie

Well imagine that!!! I go to search around the forum (after reading everything in a couple of places) and I find that you are all here! This forum has been a Godsend to me and I thank all you knowledgeable folks for making it so. I have found many answers just by reading! The links people post are fascinating and helpful too. It is so helpful to know that I am not alone in this! THANKS! Terri O

  • 2 months later...
sandsurfgirl Collaborator

Hi. This is my first post. I'm so excited to have found this forum! :) I was actually diagnosed about a year and a half ago. Ever since then I've sorta been "going it alone" as far as Celiac and the gluten free diet goes. (I mean, I do have a really supportive extended family but I don't get to see them very often. In my day-to-day life, I don't know anyone with Celiac Disease or anyone on the diet.) So it's really awesome to have found a whole community of people who understand. And there's so much information here. I wish I'd found it sooner. :)

You may even meet some real life friends from this board. Two of my greatest and most wonderful friends I met from this very board! We go out for gluten free girls nights and gripe about celiac on the phone and it's great.

With all the info I get here I recruited a celiac. I got a friend to realize that she and her kids needed to go gluten free. They couldn't afford the testing and had insurance issues. So they are healthy and doing great now gluten free and we have gluten free playdates.

Alex'sMum Newbie

Hi :)

My son (9) has just had a positive blood test for coeliac and is waiting for the biopsy. In the mean time I've been reading everything I can. It's been quite a shock, but this forum has been a real help. Reading peoples posts, and realising we're not alone in this and we'll get the hang of it has really helped. My daughter and I are being tested tomorrow, but I'm not worried anymore - we'll deal with this as a family anyway.

Thanks for being such a friendly supportive community :)

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    • knitty kitty
      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
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    • Scott Adams
      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.
    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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