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Hello everyone,

Well I am new to the site, but I have been gluten free for 2-3 years. It almost seems yesterday that I went gluten-free. I was wondering how everyone else found out they were a Celiac. Anyone want to share stories? Also I was curious how everyone else handled the news.

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Hello everyone,

Well I am new to the site, but I have been gluten free for 2-3 years. It almost seems yesterday that I went gluten-free. I was wondering how everyone else found out they were a Celiac. Anyone want to share stories? Also I was curious how everyone else handled the news.

Not from a doctor I can assure you :P

When I figured it out, my doctor had merely suggested it and left it at that. I joined this forum then, and got smart!

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Welcome Princess! I was home bound for several months and was scheduled to see a GI, who diagnosed me through endoscopy. It was a relief to find Celiac and not the dreaded "cancer" word.

I came home and did a search and found this place. I've settled in. ;)

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Not from a doctor I can assure you :P

When I figured it out, my doctor had merely suggested it and left it at that. I joined this forum then, and got smart!

Well it's good that you found out. My test came up negative but I was already gluten free. I tried to go back and ended up facing dire consequences. My mom also ended up going on the gluten free diet to be nice and she decided to cheat on the diet. She ended up with a pretty nasty rash.

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Welcome Princess! I was home bound for several months and was scheduled to see a GI, who diagnosed me through endoscopy. It was a relief to find Celiac and not the dreaded "cancer" word.

I came home and did a search and found this place. I've settled in. ;)

Thank you for the welcome Lisa. How are you coping with being a celiac? I know that even though I've been gluten free for 3 years it's still really hard.

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I was very very sick Ended up going through the ropes with doctors and Tests, Can't say I enjoyed cameras going in both ends at 18 but it's finally over and I'm getting better! =)

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Thank you for the welcome Lisa. How are you coping with being a celiac? I know that even though I've been gluten free for 3 years it's still really hard.

I generally don't have a problem day to day. I can always find "something" in a restaurant to eat.

Do you work or are you at home?

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I generally don't have a problem day to day. I can always find "something" in a restaurant to eat.

Do you work or are you at home?

I don't work yet. I just recently moved so I'm looking at getting a job. I can only work part time though, a full time job wears me down really fast.

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I was very very sick Ended up going through the ropes with doctors and Tests, Can't say I enjoyed cameras going in both ends at 18 but it's finally over and I'm getting better! =)

I know what you mean, I had the endoscopy done and I cant say I enjoyed it either. It's good you are getting better though.

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Hello everyone,

Well I am new to the site, but I have been gluten free for 2-3 years. It almost seems yesterday that I went gluten-free. I was wondering how everyone else found out they were a Celiac. Anyone want to share stories? Also I was curious how everyone else handled the news.

My 80 year old Mum got tested, and then when I investigated Celiac for her, it turns out I had most of the symptoms for DH myself :( So, got tested and the rest as they say is history!

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Hello Princess,

I am also new to the site, and have been gluten free for about the same amount of time. For me diagnosis was an extremely drawn out process. I first started showing symptoms of celiac disease when I was in the first grade. I would often feel sick at school and get sent home. However when I went to the doctor, they were never able to land a diagnosis either pointing to anything but celiac. My doctors would come up with things as silly as seasonal allergies or say that I was making it up. I was always very smart when it came to school and so I was always able to keep up until I moved to Cleveland where they have a maximum amount of days you were allowed to miss. So, I took my G.E.D.

Just before I took my G.E.D. and I went to the doctor for problems with diarrhea and my regular doctor had taken off for the weekend forgetting our appointment. I instead saw his partner who made the connection and ordered the blood test which came back positive.

Afterwards, I lived in a state of depressed denial for a few years. My life changed slowly for the better despite the constant glutening and at some point I realized I had something to lose so after a while of feeling sorry for myself and seeing my symptoms grow even worse, I decided that enough was enough and haven't looked back ever since. I still make mistakes but my symptoms seem to be better now. Sometimes I'm not sure though if I have an accurate frame of reference of what symptom free is as I have been living with the symptoms for so long.

Sorry for the essay, It was the first time I have really told the story so openly.

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Welcome to the forum.

For a few reasons I decided to have a colonoscopy. The GI also did an endoscopy. Biopsy with both procedures of course. They also did a blood test. The result was a diagnosis, but how they verbalized that was "we think that maybe you have celiac disease".

I was not surprised by the diagnosis. I had experimented with a rotation diet where I did not eat any bread or pasta for 3 days, and on the 4 day I ate whatever I wanted. So, 3 days off and 1 day on. That relieved my main symptom that was bothering me which was severe, burning itching of the skin. (no rash, no eruptions, no scaly skin, no visible evidence of the itching)

So, I was diagnosed by a gastroenterologist, but I was on my way to figuring it out for myself (after many years of symptoms).

I was never terribly ill, never hospitalized, and for that I am very thankful.

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Hello Princess,

I am also new to the site, and have been gluten free for about the same amount of time. For me diagnosis was an extremely drawn out process. I first started showing symptoms of celiac disease when I was in the first grade. I would often feel sick at school and get sent home. However when I went to the doctor, they were never able to land a diagnosis either pointing to anything but celiac. My doctors would come up with things as silly as seasonal allergies or say that I was making it up. I was always very smart when it came to school and so I was always able to keep up until I moved to Cleveland where they have a maximum amount of days you were allowed to miss. So, I took my G.E.D.

Just before I took my G.E.D. and I went to the doctor for problems with diarrhea and my regular doctor had taken off for the weekend forgetting our appointment. I instead saw his partner who made the connection and ordered the blood test which came back positive.

Afterwards, I lived in a state of depressed denial for a few years. My life changed slowly for the better despite the constant glutening and at some point I realized I had something to lose so after a while of feeling sorry for myself and seeing my symptoms grow even worse, I decided that enough was enough and haven't looked back ever since. I still make mistakes but my symptoms seem to be better now. Sometimes I'm not sure though if I have an accurate frame of reference of what symptom free is as I have been living with the symptoms for so long.

Sorry for the essay, It was the first time I have really told the story so openly.

Thank you so much for your story. I am so glad that you shared. When I found out that I might have Celiac I too went through a state of depression. It's shameful to say this, but I felt like a prisoner in my own body. Once I figured out how to eat and got a doctor that cared I started getting better.

It was really hard having to explain things to people so I stopped seeing friends, dating, and going out. It's really hard being Celiac...no one knows what it is, no one understands it, and people think you're weird or contagious. After I realized I was missing out on my life I slowly began to start going out again. It's been 2-3 years since then and now I realize that it was worth missing out on life. I now tell everyone I know about Celiac and try to raise awareness.

I've lived in Oklahoma my entire life and moved away for the first time in my life (to Illinois); I was stunned to find so many gluten free options. Where I live in Oklahoma theres scarcely any gluten free food. I just moved back to Oklahoma and now they are starting to carry more Gluten free foods. Awareness is being raised and that just makes it so much easier on new celiacs. I am glad to hear that you are getting better and that you are able to openly tell the story. That's only the first step, it'll keep getting so much easier with time.

Sorry for the book I wrote lol

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Welcome to the forum.

For a few reasons I decided to have a colonoscopy. The GI also did an endoscopy. Biopsy with both procedures of course. They also did a blood test. The result was a diagnosis, but how they verbalized that was "we think that maybe you have celiac disease".

I was not surprised by the diagnosis. I had experimented with a rotation diet where I did not eat any bread or pasta for 3 days, and on the 4 day I ate whatever I wanted. So, 3 days off and 1 day on. That relieved my main symptom that was bothering me which was severe, burning itching of the skin. (no rash, no eruptions, no scaly skin, no visible evidence of the itching)

So, I was diagnosed by a gastroenterologist, but I was on my way to figuring it out for myself (after many years of symptoms).

I was never terribly ill, never hospitalized, and for that I am very thankful.

Thank you so much for sharing. I like to hear how other people have diagnosed and how they are dealing with it afterwards. I am glad you found out though.

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Thank you so much for your story. I am so glad that you shared. When I found out that I might have Celiac I too went through a state of depression. It's shameful to say this, but I felt like a prisoner in my own body. Once I figured out how to eat and got a doctor that cared I started getting better.

It was really hard having to explain things to people so I stopped seeing friends, dating, and going out. It's really hard being Celiac...no one knows what it is, no one understands it, and people think you're weird or contagious. After I realized I was missing out on my life I slowly began to start going out again. It's been 2-3 years since then and now I realize that it was worth missing out on life. I now tell everyone I know about Celiac and try to raise awareness.

I've lived in Oklahoma my entire life and moved away for the first time in my life (to Illinois); I was stunned to find so many gluten free options. Where I live in Oklahoma theres scarcely any gluten free food. I just moved back to Oklahoma and now they are starting to carry more Gluten free foods. Awareness is being raised and that just makes it so much easier on new celiacs. I am glad to hear that you are getting better and that you are able to openly tell the story. That's only the first step, it'll keep getting so much easier with time.

Sorry for the book I wrote lol

I know exactly what exactly what you mean. Social events are definitely hard, and dating is nearly impossible without a disclaimer. My last serious girlfriend was one of my main motivators to go gluten free, she was very encouraging but still didn't take the time to know all the little details. ( I remember her once trying to use hand sanitizer after eating some bread) One thing I would suggest is find yourself a vegan! They understand all the concepts of celiac disease and many resturaunts that offer vegan food also offer gluten free (at least in my area). Glad to hear you are in an area where more options are available. I moved to Cleveland from an extremely small town in Arkansas and had to drive 45 minutes for anything gluten free so I can definitely relate. Here, I even have different stores to pick from and a few resturaunts that I feel comfortable going to.

Going back to social events, would you say your friends understand your disease and how it affects your ability to enjoy yourself in social situations? Sometimes I think mine get it, and other times it's like explaining the disease all over again.

Looks like between the two of us we are going to have the next great american novel... I wish we were getting paid by the word haha

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I know exactly what exactly what you mean. Social events are definitely hard, and dating is nearly impossible without a disclaimer. My last serious girlfriend was one of my main motivators to go gluten free, she was very encouraging but still didn't take the time to know all the little details. ( I remember her once trying to use hand sanitizer after eating some bread) One thing I would suggest is find yourself a vegan! They understand all the concepts of celiac disease and many resturaunts that offer vegan food also offer gluten free (at least in my area). Glad to hear you are in an area where more options are available. I moved to Cleveland from an extremely small town in Arkansas and had to drive 45 minutes for anything gluten free so I can definitely relate. Here, I even have different stores to pick from and a few resturaunts that I feel comfortable going to.

Going back to social events, would you say your friends understand your disease and how it affects your ability to enjoy yourself in social situations? Sometimes I think mine get it, and other times it's like explaining the disease all over again.

Looks like between the two of us we are going to have the next great american novel... I wish we were getting paid by the word haha

I actually just moved back to Oklahoma like 2 weeks ago....sadly. I really don't like to socialize because it's so hard, but if I do I usually eat before attending. Usually before dating someone I tell them flat out and upfront about it, and if they even flinch I wont even consider dating them. When I first found out that I had it I was engaged, and once he found out he decided it "was too much trouble and not worth his time". Where I live there are absolutely no restaurants that are gluten free, not many stores carry the foods here, and theres no vegetarian places around here. I don't even think I've ever met a vegan in my entire life.

I would say that absolutely no one understands and everytime I go to a social event I feel completely out of place. I don't ever really enjoy myself. The nicest thing someone has done for me was at a birthday party, they knew I couldn't eat the cake so they bought me a bowl of fruit to eat instead. I usually eat before I leave the house to ensure I dont get cross contaminated or worse.

Lol maybe the novel will hit the bestsellers list and make millions. Then I would buy my own gluten free company and there would never be any problems again.

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I actually just moved back to Oklahoma like 2 weeks ago....sadly. I really don't like to socialize because it's so hard, but if I do I usually eat before attending. Usually before dating someone I tell them flat out and upfront about it, and if they even flinch I wont even consider dating them. When I first found out that I had it I was engaged, and once he found out he decided it "was too much trouble and not worth his time". Where I live there are absolutely no restaurants that are gluten free, not many stores carry the foods here, and theres no vegetarian places around here. I don't even think I've ever met a vegan in my entire life.

I would say that absolutely no one understands and everytime I go to a social event I feel completely out of place. I don't ever really enjoy myself. The nicest thing someone has done for me was at a birthday party, they knew I couldn't eat the cake so they bought me a bowl of fruit to eat instead. I usually eat before I leave the house to ensure I dont get cross contaminated or worse.

Lol maybe the novel will hit the bestsellers list and make millions. Then I would buy my own gluten free company and there would never be any problems again.

wow sad story :(

welcome to the #1 best celiac forum

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wow sad story :(

welcome to the #1 best celiac forum

Thanks for the welcome :)

No reason to be sad about it, I'm ten billion times healthier.

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I actually just moved back to Oklahoma like 2 weeks ago....sadly. I really don't like to socialize because it's so hard, but if I do I usually eat before attending. Usually before dating someone I tell them flat out and upfront about it, and if they even flinch I wont even consider dating them. When I first found out that I had it I was engaged, and once he found out he decided it "was too much trouble and not worth his time". Where I live there are absolutely no restaurants that are gluten free, not many stores carry the foods here, and theres no vegetarian places around here. I don't even think I've ever met a vegan in my entire life.

I would say that absolutely no one understands and everytime I go to a social event I feel completely out of place. I don't ever really enjoy myself. The nicest thing someone has done for me was at a birthday party, they knew I couldn't eat the cake so they bought me a bowl of fruit to eat instead. I usually eat before I leave the house to ensure I dont get cross contaminated or worse.

Lol maybe the novel will hit the bestsellers list and make millions. Then I would buy my own gluten free company and there would never be any problems again.

I feel ya, I don't attend 90% of the social events in my circle. This has caused a lot of problems for me, as far as keeping friends/social obligation. I am sorry to hear about your ex-fiance, I can relate as I was engaged too and she left me for pretty much the same reason. She knew about it going in but I think that as she thought about the fact that this would be her life, and not just mine. That she wouldn't be able to have the same kinds of experiences as others without the concern of gluten I think that it was too much for her. I am still pretty bitter about it, I feel like I was tricked somehow.

If you get that book deal, don't forget the little people!

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I feel ya, I don't attend 90% of the social events in my circle. This has caused a lot of problems for me, as far as keeping friends/social obligation. I am sorry to hear about your ex-fiance, I can relate as I was engaged too and she left me for pretty much the same reason. She knew about it going in but I think that as she thought about the fact that this would be her life, and not just mine. That she wouldn't be able to have the same kinds of experiences as others without the concern of gluten I think that it was too much for her. I am still pretty bitter about it, I feel like I was tricked somehow.

If you get that book deal, don't forget the little people!

Yeah, it sucks knowing that someone could do such a thing. Just gotta stay positive and eventually there will be someone who understands and someone who doesnt run. I've pretty much forgiven the guy, it doesnt pay to hold a grudge.

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Loved reading the stories.

I woke up to a phone call from the doctor saying "Do you want the good news or the bad news first?" The good news was my thyroid and other blood tests were good but the results came back positive for celiac. It was the strangest experience. At first I just wanted to break down but then I realized 1) I don't have to rely on medication 2) my symptoms will finally go away 3) the cure is as simple as changing my diet.

I usually eat before social functions or bring something with me. And you know I'm usually pleasantly surprised that they made something gluten free for me. I really hope you guys don't limit yourself socially because of food. It should never get in the way of living life.

Funny story, one time I tried to dodge a date when a guy asked me to dinner. I was like, well it would be hard because I eat gluten free. I thought he'd be clueless and shy away. He goes, OH well I can take you to -named a couple places-." I was like, err....

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Loved reading the stories.

I woke up to a phone call from the doctor saying "Do you want the good news or the bad news first?" The good news was my thyroid and other blood tests were good but the results came back positive for celiac. It was the strangest experience. At first I just wanted to break down but then I realized 1) I don't have to rely on medication 2) my symptoms will finally go away 3) the cure is as simple as changing my diet.

I usually eat before social functions or bring something with me. And you know I'm usually pleasantly surprised that they made something gluten free for me. I really hope you guys don't limit yourself socially because of food. It should never get in the way of living life.

Funny story, one time I tried to dodge a date when a guy asked me to dinner. I was like, well it would be hard because I eat gluten free. I thought he'd be clueless and shy away. He goes, OH well I can take you to -named a couple places-." I was like, err....

What a GREAT attitude you have pianoland! You will be just fine on the diet. And welcome to your first day of recovery. Welcome here! :D

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Oh that was almost a year ago now! Just was sharing my initial reaction. :)

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    • Hello, I see you posted this a long while ago, and perhaps--I hope-- it's no longer a matter of concern, but I thought I'd mention that shortly before I was diagnosed for celiac's, I had distinct yellow blotches on the corners of my eyelids toward my nose. Some months after I had stopped eating gluten, the yellow gradually went away, and--as it just reappeared now several years later, I googled the issue again.  I am only speculating here, but I do believe it is related to liver problems, which, in turn, are related to celiac's. I don't think liver function tests cover all aspects of liver health. I say this because when I was pregnant I developed a temporary liver condition called interhepatic colestasis of pregnancy (ICP), but my liver function tests had been fine. (The condition is diagnosed based on bile levels in the blood, not on liver function). I discovered upon some research that (of course!) ICP  can be associated with celiac's disease.  My hunch is this-- that celiac's presents two problems to the liver: 1) the malabsorption of nutrients--esp. Vit. K2-- that are vital liver health; 2) since gluten registers as a toxin to the immune system (I think?), perhaps the liver gets overloaded processing so much toxic material. Or perhaps there's some other reason. At any rate, poor liver health and celiac's do seem to be linked, according to a few articles I've found. Anyway, hope your problems are resolved now.  
    • my daughter did stool test from enterolab but this gluten sensitive blood test is from http://requestatest.com/tests/search    
    • OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
    • NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is a greater chance you are celiac or "early stages" especially in light of your symptoms. All 3 of those factors weighed together was what I was referring to.
    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
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