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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

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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kareng Grand Master

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

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

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

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

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

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

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

 

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

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

 

HMB Newbie

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

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

 

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

justneguy Newbie

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

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

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

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

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

glutenfree4mykid Newbie

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

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

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

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

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 Grand Master

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

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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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • 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
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      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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