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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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  • Posts

    • Scott Adams
      It looks like "mannite" is another name for "mannitol": https://en.wikipedia.org/wiki/Mannitol You are correct that it can trigger IBS-like symptoms, as we recently did an article on this: I'm not sure if there is a way around this, as it is likely needed for the test. Perhaps contact your doctor to see if there might be an alternative?
    • nanny marley
      Oral drink: You will be given a solution of mannitol mixed with water to drink over a period of about 30-60 minutes this is what it says it is ,?
    • nanny marley
      Brilliant thankyou for the information I will contact them tomorrow, I was just concerned because I'm already in a bowel flare too , and I didn't want to take anything that would cause me more issues , especially with the way sweeteners make be feel I've had a really bad throat from this type of stuff before , and it upsets my digestive system too and I have a wedding in a week 😳
    • Scott Adams
      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
    • Scott Adams
      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
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