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To All The "lurkers" Out There...


Lisa

Recommended Posts

Lisa Mentor

Welcome to the Club Hannah!


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aquamarine-queen Rookie

Ok, so now that I've taken the plunge and posted on my own nobody has responded yet (and it seems like just a few people are reading). Feeling a little self-conscious and alone here :huh:

AquaQ

CarlaB Enthusiast
Ok, so now that I've taken the plunge and posted on my own nobody has responded yet (and it seems like just a few people are reading). Feeling a little self-conscious and alone here :huh:

AquaQ

Don't feel like that, sometimes responses take a while ... I'll go look. :)

aquamarine-queen Rookie

Please excuse my personal pity party above -- I'm a little out of sorts today and I wish I'd stopped to think before I posted :rolleyes:

AQ

CarlaB Enthusiast
Please excuse my personal pity party above -- I'm a little out of sorts today and I wish I'd stopped to think before I posted :rolleyes:

AQ

Always blame it on the gluten. :rolleyes:

eveelady Newbie

doesnt "lurker" sound seriously creepy!

anyway, like most others here i have had major issues getting diagnosed.

been sick on and off for years, and had major stomach surgery when at school, but really ill for past 18months - have lost about 20 kilos in about 6 months (about 45 pounds i think) but unlike most of you from what i have been reading, my main prob isnt bowel issues (althought that is still there), it is violent vomiting - i was hospitalised, put on liquid feding and then released with my own crates of liquid nutrition - nice solution eh!

I have had so many tests now that i cant remever them all, just that they were all pretty unpleasent. Some of them twice because i would vomit or pass out and have to have it repeated.

after talking to one of the parents at work (kindy teacher - lots of specialist/research doctors in my class) had positive blood test for coeliacs, and was sent for biopsy but was told by doc that going gluten free before biopsy wouldnt matter - was 2 1/2 monts before had it done, and came back negative. not surprising now from what i have read here - wish i had found this site b4 going gluten free.

oh and of course i now have gallbladder disease due to rapid weight loss and have to ahve it out, because it is astoundingly painful.

and now i find out that i have polycyctic ovaries, yay. (at least all my otherwise useless tests were good for something!)

one last winge now - i am so sick of everyone saying how good i look now that i am losing weight - and when i tell them why -"at least UR looking good with it!"

AARRGGHHHHHHH!!!!!!!!!!!

thanks for listening to my whinge, my partner must be so sick of listening to me! :wacko:

Lisa Mentor

A kindly welcome from alot of us. Learkers "creep" but they learn. :)


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NoGluGirl Contributor
doesnt "lurker" sound seriously creepy!

anyway, like most others here i have had major issues getting diagnosed.

been sick on and off for years, and had major stomach surgery when at school, but really ill for past 18months - have lost about 20 kilos in about 6 months (about 45 pounds i think) but unlike most of you from what i have been reading, my main prob isnt bowel issues (althought that is still there), it is violent vomiting - i was hospitalised, put on liquid feding and then released with my own crates of liquid nutrition - nice solution eh!

I have had so many tests now that i cant remever them all, just that they were all pretty unpleasent. Some of them twice because i would vomit or pass out and have to have it repeated.

after talking to one of the parents at work (kindy teacher - lots of specialist/research doctors in my class) had positive blood test for coeliacs, and was sent for biopsy but was told by doc that going gluten free before biopsy wouldnt matter - was 2 1/2 monts before had it done, and came back negative. not surprising now from what i have read here - wish i had found this site b4 going gluten free.

oh and of course i now have gallbladder disease due to rapid weight loss and have to ahve it out, because it is astoundingly painful.

and now i find out that i have polycyctic ovaries, yay. (at least all my otherwise useless tests were good for something!)

one last winge now - i am so sick of everyone saying how good i look now that i am losing weight - and when i tell them why -"at least UR looking good with it!"

AARRGGHHHHHHH!!!!!!!!!!!

thanks for listening to my whinge, my partner must be so sick of listening to me! :wacko:

Dear eveelady,

I have been through similar things. It is pure misery. I am having a hard time quite often myself. I had my gallbladder out, and it was a good thing I did. It was ready to rupture! The doctor told me I did not have gallbladder disease because the tests showed nothing. It is a good thing I ignored him and listened to my body! :o I was tested by blood for Celiac years ago, but they said the results were negative. After seeing a holistic physician last year, she told me she has had a handful of patients who were Celiac that tests did not show it. I tried the diet, and she is sure I am a Celiac. My medical history of Thyroid Disease, Anemia, and other problems coincide with others' histories who are Celiac. I miss being skinny, I have to say. The yeast overgrowth could be adding to the weightloss difficulty. I was like you before, where I kept losing despite not eating anything that would cause weightloss. I believe since you have polycystic ovaries it is likely you have a yeast overgrowth as well.

Sincerely,

NoGluGirl

happygirl Collaborator

we really are happy to have you all on board...azul, hannah, aq, eveelady, and all others :)

hope you join in and make yourself at home. we all started with just a handful of posts, too!

Let us know what we can do to help!

Laura

eveelady Newbie
I believe since you have polycystic ovaries it is likely you have a yeast overgrowth as well.

Sincerely, NoGluGirl

NoGluGirl Can you tell me what "yeast overgrowth" is? never heard of it.

larry mac Enthusiast
Just want to add my welcome to the delurkers. :lol:

Please add my welcome to all the unloggers.

best regards, lm

larry mac Enthusiast
........I wish I'd stopped to think before I posted :rolleyes:

AQ

AQ,

You don't know how many times I've said that. I should add that to my signature (but it's already too long).

best regards, lm

Guest lorlyn

Hey NoGluGirl what does "official purple glittery bat keeper "mean?

smiley1nyc Apprentice

I'm sorry if this posted some place else also 'm having trouple figureing out wher the new topics go :blink: .

I would like to know how manu of you have been diagnosed with Gluten Intolerance through a Saliva test or self diagnosed? Also who have Thyroid anti bodies and adrenal stress? Thats what i have? And if so what are you doing to eliminate these problems? Do you become very sick if you eat gluten? i don't i have heartburn, joint pain some dizzines, light headed, but not violently ill, and it can also be contributed to the thyroid like the cold hands and feet, and always cold. Use to get mouth ulcer but haven't for a while..Also lost 70%ofhair thyroid or gluten?I have heard people say once on the gluten diet all this goes away, but i hav heard some people say it does not!!thyroid is different.

Also i'm a little confussed about the product info...Can not have Vit. E at all or only in cosmetics? how about wheat protien in shampoo? i also will be traveling to Panama in the summer i think i'm going to have to bring most of my food. they really don't have too mch american style brands, and most things are in spanish. i will also be staying at a resort for a couple of days what do i ea at the resturants. They cook with a lot of msg there??? what to do? I know if i ask they won't get it believe me. what do i eat? And this whole cros contamination thing the list a whole food says that they can not be respoceible for cross contamination. i can't call every major food company in there a list with food that they are 100% sure about and also a product list? they say that tide laundry detergent is OKand neutrogena products are ok. Aquaphor said they don't use gluten, but can't gurantee no cross contamination, cetaphil also.. I'd rather shop for my food then order on line. i'd like to start this diet but it's so over whelming. NO gluten dairy and sugar. I'm not sure about the sugar though i don't know how that has to do with all this, and i don't add extra sugar to anything...any advice would help!!!Recomendations on books with receipies, and food list(brands)products list also. would be great..Thank you so much..

Every day is see 100-150ish people log on to this site as guests. I would like to welcome them to be a part of this wonderful site.

Please feel that you can come into a site and get the answers that you need. Your voice is important and your questions will be answered. It is also a safe place to fall, when the world doesn't understand.

Join us.

NoGluGirl Contributor
NoGluGirl Can you tell me what "yeast overgrowth" is? never heard of it.

Dear eveelady,

Yeast overgrowth is when the yeast Candida Albicans overpopulates in your system. Eventually, it becomes a full-body fungal infection. It makes you very ill. If you have been on a lot of antibiotics (either in childhood or recently), steroids (for asthma or other conditions), and birth control for any reason, you are very likely to have it. High carbohydrate diets add to the trouble. Normally, the yeast overtakes the colon. It can cause digestive problems, such as reflux, diarrhea, nausea, and bloating. This illness also tends to make you crave sugar, and can cause low blood glucose. I wrote an essay on it a while back. If you want, I could send a copy to you. Just give me your e-mail!

Dear lorlyn,

Purple Glittery Bat Keeper means just that! :lol: Allow me to explain! You see, a member began a thread a year ago about Leaky-Gut Syndrome and other issues. She and some of the other people on the thread were goofing around, and they started creating their own town named after the person who started the thread. Rachelville was born last year! :) It is our own fictional town safe from gluten, pesticides, pollution, etc. We started making up all sorts of fun silly things. Now we have purple glittery bats, redneck deer guards (originally we had protective militant geese, but they left due to Auxigro and msg poisoning) :lol: and all kinds of other crazy things!

Sincerely,

NoGluGirl

little d Enthusiast

Hi my name is Donna (little d does not mean what you think) Yes I was one of those lurker out there and finally decided to join. I am not diagnosed with celiac disease all my testing came back negative, I was gluten-free for about 4months when tested with the scopes. I also had the PillCam done; again negative as well which I started eating reglar food for 6 months for that, and had all my symptoms come back. I have recently started Gluten free again, feeling better, I havent stepped on a scale because the first time that was gluten-free I lost 14lbs. I have'nt stepped on a scale this time because I have a boot cast on my broken foot and it is a pain to get on and off when I'm not at home. You see I am a little overweight for my body, and I know everybody is affected differantly by celiac disease. My sister thinks that she may have it as well she has the same symptoms as me but worse all her test came back negative because she was gluten-free as well at testing but responded well to the diet. THank you all for welcoming us all to this wonderful site.

Donna From Arlington Texas

Rad3737 Rookie

I joined Celiac.com in Nov. 2005 when I was first diagnosed. This message board has been a wealth of information and support.

Had been doing really well and feeling stronger all time, until March, 1st this year. Six weeks ago thought I'd gotten food poisoning w/ terrible bloating and gas. But now that I've read many of your message re: bloating and gas, am beginning to wonder if I am somehow eating hidden gluten.

Anyway, the Celiac.com message board makes eating gluten free tolerable from all your fun and informative posts.

Dianna

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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