Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

To All The "lurkers" Out There...

Lisa

By Lisa
in Coping with Celiac Disease

Recommended Posts

Lisa Mentor
Lisa
Posted
  • Author

Welcome to the Club Hannah!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aquamarine-queen Rookie
aquamarine-queen
Posted

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
CarlaB
Posted
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
aquamarine-queen
Posted

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
CarlaB
Posted
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
eveelady
Posted

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
Lisa
Posted
  • Author

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoGluGirl Contributor
NoGluGirl
Posted
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
happygirl
Posted

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

Please add my welcome to all the unloggers.

best regards, lm

larry mac Enthusiast
larry mac
Posted
........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
Guest lorlyn
Posted

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

smiley1nyc Apprentice
smiley1nyc
Posted

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
Posted
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
little d
Posted

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
Rad3737
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.