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Post Here To Join Celiac.com's Online Support Group With Live Chat Meetings! (Free)

Scott Adams

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Clare123 Newbie
Clare123
Posted

hello, I was diagnosed with celiac disease 14 months ago I have been gluten free for about 12 months what I find hardest is cross contamination I try my best to be gluten free. when I'm glutened I find my mood totally changes and the littlest things can set me off I have four children who suffer the effects of gluten

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  • Replies 81
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kareng Grand Master
kareng
Posted

hello, I was diagnosed with celiac disease 14 months ago I have been gluten free for about 12 months what I find hardest is cross contamination I try my best to be gluten free. when I'm glutened I find my mood totally changes and the littlest things can set me off I have four children who suffer the effects of gluten

 

 

Welcome. Are you just suggesting a topic for the chats?  Or did you have a question?  If you have some specific questions, you might want to make a new thread - maybe the post-dx section?

trish56 Newbie
trish56
Posted

Hi, I would like to join this support group. I was told by my doctor that I was gluten sensitive. I have fibromyalgia and ibs and other medical issues and really would like to get healthy and need the help and support.

IHateSpiders Newbie
IHateSpiders
Posted

I would love chatting about this stuff.  My wife has become a Dictator in the kitchen.  I don't know what she can eat anymore.   Now she said she can't have bacon!!!! I give up.  Maybe I'll learn about food choices for her.  Good to know there's a chat for this.  I'm on it!

kareng Grand Master
kareng
Posted

I would love chatting about this stuff.  My wife has become a Dictator in the kitchen.  I don't know what she can eat anymore.   Now she said she can't have bacon!!!! I give up.  Maybe I'll learn about food choices for her.  Good to know there's a chat for this.  I'm on it!

I have never seen a bacon with gluten. Just read the ingredients.

Cincin47 Newbie
Cincin47
Posted

I would love chatting about this stuff.  My wife has become a Dictator in the kitchen.  I don't know what she can eat anymore.   Now she said she can't have bacon!!!! I give up.  Maybe I'll learn about food choices for her.  Good to know there's a chat for this.  I'm on it!

She can eat bacon.  Unless she has another reason like sodium nitrates.

justneguy Newbie
justneguy
Posted

I would love chatting about this stuff.  My wife has become a Dictator in the kitchen.  I don't know what she can eat anymore.   Now she said she can't have bacon!!!! I give up.  Maybe I'll learn about food choices for her.  Good to know there's a chat for this.  I'm on it!

Bacon is fine.  Having recently been diagnosed, I'm learning all this, too - as is my wife.  One of the things you may want to consider is to eliminate gluten altogether - for both of you.  It becomes easier (if it is just the two of you, that is).  Because the other thing you need to worry about is cross-contamination.  That is, she'll need to have her own peanut butter jar, butter/margarine stick or tub, etc . . . this is because if you were to dip into, let's say, a peanut butter jar - spread that on wheat toast (or white toast), and then re-dip the knife - BOOM - that jar is now contaminated because even trace amounts (crumbs) can cause problems.  This has been the hardest part of adherence for me (or I should say - for my wife).  I know - ugh!  Also - worth considering - my GI guy told me that everyone would be better off not eating gluten - because the human body does not do a good job digesting modern wheat / gluten / gliadin.  You may find that you'll feel better, too.  Just my 2 cents.  Good Luck (Boars Head Deli Meat is ok, too . . . but, again, it's the dreaded cross-contamination that you need to worry about (e.g., did they clean the meat slicer from use with other non-gluten meats?) 

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kareng Grand Master
kareng
Posted

Alrighty..... I think we have established that bacon is gluten free. Back to the purpose of this thread - joining an on- line chat.

moosemalibu Collaborator
moosemalibu
Posted

 

Just a quick reminder to everyone who wants to participate in the live chat - there are 3 articles and lovely recipe to try before the meeting. Be sure to check the link above! Hope to see you all there!

HMB Newbie
HMB
Posted

I would like to join this support group.  Is it still meeting?

 

HMB Newbie
HMB
Posted

I'm in the eastern standard time zone.  I am 34 and was diagnosed with Celiac a few months ago.  I've also been diagnosed with Candida and Small Intestine Bacterial Overgrowth by my holistic physician.  Finally, got the answers to the the root cause of my many health issues that I had for most of my life that all traditional doctors missed.  I am struggling everyday and need all the support I can get!

moosemalibu Collaborator
moosemalibu
Posted

I would like to join this support group.  Is it still meeting?

 

yes - Our first meeting is March 15th at 2pm pacific.

justneguy Newbie
justneguy
Posted

I'm in the eastern standard time zone.  I am 34 and was diagnosed with Celiac a few months ago.  I've also been diagnosed with Candida and Small Intestine Bacterial Overgrowth by my holistic physician.  Finally, got the answers to the the root cause of my many health issues that I had for most of my life that all traditional doctors missed.  I am struggling everyday and need all the support I can get!

Hi - me too.  Just 2 months ago - ugh!  A bit older than you - I'm 48.  Probably had Celiac (I bet) for 15 years, easy.  Never even heard of it.  But was taking probiotics during that time.  Interested to hear about your candida and batercial overgrowth.  I've wondered about that myself - reading so much on Celiac in the last 2 months.  It seems so much of functional medicine is so far out in front of this issue, but traditional medicine trails behind (and my doctor is a traditional internist).  Testing, etc . . .

Scott Adams Grand Master
Scott Adams
Posted
  • Author

Just a quick reminder which I'll post again before the meeting: Our first live chat Celiac.com Online Support Group meeting will be held on 03/15/2014 at 2 PM Pacific.

HMB Newbie
HMB
Posted

Hi - me too.  Just 2 months ago - ugh!  A bit older than you - I'm 48.  Probably had Celiac (I bet) for 15 years, easy.  Never even heard of it.  But was taking probiotics during that time.  Interested to hear about your candida and batercial overgrowth.  I've wondered about that myself - reading so much on Celiac in the last 2 months.  It seems so much of functional medicine is so far out in front of this issue, but traditional medicine trails behind (and my doctor is a traditional internist).  Testing, etc . . .

Hey, I'm so sorry I haven't responded sooner.  Life has been crazy and hectic with struggling with all this chronic illness and trying to take care of my very active 13 month old boy!  Yeah, I actually think I've had most of my health issues the majority of my life.  I was very fortunate to find a board certified holistic physician, who is awesome!  I had to go through a lot of testing to get all the answers: standard blood work covered by insurance, ALCAT test (food sensitivities), NutrEval test, and CDSA 2.0 (Comprehensive Digestive Stool Analysis).  The CDSA showed the candida and the SIBO.  I also have a lot of food sensitivities and nutrient deficiencies, which is all common with Celiac.  Hope this info. may help and that you can find a physician to do this testing and get to the root of all your issues.

justneguy Newbie
justneguy
Posted

sounds like you have a great doctor.  I can't get my doctor to even return an email at this point (have only sent him two on the subject).  I wanted to get an MMA and homocysteine test - for B12 - and I get no reply. And my Vitamin D test (that I asked to have done) came back at 28 - which I think is low . . . but he said nothing about it.  OK.  hmm . . . I'm supplementing with D3.

 

 

Hey, I'm so sorry I haven't responded sooner.  Life has been crazy and hectic with struggling with all this chronic illness and trying to take care of my very active 13 month old boy!  Yeah, I actually think I've had most of my health issues the majority of my life.  I was very fortunate to find a board certified holistic physician, who is awesome!  I had to go through a lot of testing to get all the answers: standard blood work covered by insurance, (Company Name Removed - They Spammed This Forum and are Banned) test (food sensitivities), NutrEval test, and CDSA 2.0 (Comprehensive Digestive Stool Analysis).  The CDSA showed the candida and the SIBO.  I also have a lot of food sensitivities and nutrient deficiencies, which is all common with Celiac.  Hope this info. may help and that you can find a physician to do this testing and get to the root of all your issues.

 

dilettantesteph Collaborator
dilettantesteph
Posted

Thanks for organizing this.  I put it on my calendar.

glutenfree4mykid Newbie
glutenfree4mykid
Posted

my 16 year old son was just diagnosed with Celiac. i am so happy to have found this support group! cant wait to get started!

glutenfree4mykid Newbie
glutenfree4mykid
Posted

Just a quick reminder which I'll post again before the meeting: Our first live chat Celiac.com Online Support Group meeting will be held on 03/15/2014 at 2 PM Pacific.

cant wait! will we receive an email reminder?

Scott Adams Grand Master
Scott Adams
Posted
  • Author

Before I forget, I wanted to add an article/topic to our agenda for our meeting on March 15th, it is:

https://www.celiac.com/articles/23589/1/Is-Monsantos-Roundup-Behind-the-Global-Explosion-of-Celiac-Disease/Page1.html

seameruok Rookie
seameruok
Posted

Hello to all the sillyak people.  I have been gluten free since being diagnosed in 2000.  Looking forward to chatting with others.

Scott Adams Grand Master
Scott Adams
Posted
  • Author

Hi Everyone,

 

Just a quick reminder--our first meeting is tomorrow at 2 PM Pacific:

https://www.celiac.com/gluten-free/forum-22/announcement-4-first-celiaccom-online-support-group-meeting-3152014-2-pm-pacific-5-pm-eastern/

 

If you have time please read the articles listed in the meeting announcement, but this is not required to attend the meeting. 

 

Jamie (moosemalibu) will be the meeting's leader, and I'll also attend. I hope to see you all there tomorrow!

Scott Adams Grand Master
Scott Adams
Posted
  • Author

Last reminder:

t_announcement.pngLive Chat Meeting Today! 3/15/2014 @ 2 PM Pacific (5 PM Eastern)
Scott Adams Grand Master
Scott Adams
Posted
  • Author

Hello Everyone, 

 

Our first meeting was on Saturday, and it went very well. Thank you to all of those who attended, and please let me know if you wanted to attend, but could not due to a technical issue, or because of the time the meeting was set. We are now working on the schedule for our 2nd meeting, and we should post it soon.

 

If you did attend and have any questions or comments, please share them here, as we hope to improve our future meetings.

 

For those who could not attend, I have attached a transcript of the meeting below.

 

20140315 - 001 Meeting Transcript.pdf

 
 
SkyBlue4 Apprentice
SkyBlue4
Posted

Darn! Sorry I missed this. Weekends are crazy busy with my kids and all of their activities. 

I can't seem to access the transcript. When I click on the pdf link, I get a message that says I don't have permission to view it.  :(

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    • Scott Adams
      Newbie with Celiac / NCGS symptoms

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      I would pressure the lab to do the IgA control test for free so that you won't write a poor review about their testing services. You could get this done at any time, whether or not you are gluten-free, however, the celiac disease Tissue Transglutaminase tTG-IgA test must be done after you've been eating lots of gluten for around 6 weeks. This way you could salvage the results of your tTG-IgA test, as long as you were eating lots of gluten beforehand.
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      Given your strong reactions it would be wise not to eat things offered to you without reading the ingredient labels. It's possible there was indeed gluten or some allergen in the chocolates--barley malt is a common ingredient in some chocolates.
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      Yes, an IgG panel is the logical next step. However, you would still need to be consuming normal amounts of gluten to ensure valid IgG testing. Since it has only been a week that you have been off gluten, there is still likely time to restore antibodies to detectable levels before the blood draw. IgG antibody tests are not quite as specific for celiac disease as are the IGA tests but they are certainly valuable in the case of IGA deficiency. They also seem to have a little more "staying power" in the sense of detecting celiac disease in the case of those who may have already started a gluten-free diet as long as they haven't been on it for an extended period of time. But don't rely on that. Get back on gluten if you can possibly endure it if you intend to go forward with IgG testing. This might be helpful:   
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