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Your Top Two Pieces Of Advice


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57 replies to this topic

#46 rosetapper23

 
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Posted 11 June 2011 - 11:26 AM

Re IrishHeart's last posting:

"5. If you tell your family that it is genetic and you try to educate them, be prepared to be scoffed at--or worse, ignored. Just know, you tried your best to spare them the misery. Then, let it go."

Gee, and here I've been beating them with a stick like a pinata until the gluten all falls out!!
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#47 mommida

 
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Posted 12 June 2011 - 06:28 AM

Gee, and here I've been beating them with a stick like a pinata until the gluten all falls out!!

We didn't I think of that!!? My family didn't listen to me either. a niece did start on the gluten free diet because she was in so much pain nd miserable.
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Michigan

#48 luvs2eat

 
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Posted 12 June 2011 - 08:15 AM

I know there are a million different symptoms and levels of difficulty and sensitivity, but in general:

1. This isn't that big a deal. In the scheme of life and all the things/diseases, etc. that people can have and can go wrong... this is nothing. We just have to learn how to cook a little differently, that's all.

2. Read labels... every single time... even if it's something you've been buying for years.
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#49 domesticactivist

 
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Posted 12 June 2011 - 08:43 AM

Yeah, maybe the moderators can add the list to the top and make it sticky.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#50 kareng

 
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Posted 12 June 2011 - 08:51 AM

Korwyn, maybe if we ask nicely one of the moderators will "sticky" it and weed out our friendly back-and-forth so it's all suggestions. I don't think anyone would mind this thread being cleaned up and if it's "sticky" new folks can find it easily.



Yeah, maybe the moderators can add the list to the top and make it sticky.



I started to pour maple syrup in the celiac disease drawer to make this sticky, but my son stopped me & said I didn't understand. :)

I sent a note to the "Boss" that you all are asking about this. I don't know if its doable or desired. It has been a fun post. We could do it every couple of months and get different people but I imagine most of the advice would stay the same. I'm quite partial to the advice about beating people with a stick like a pinata. :ph34r:
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#51 Marilyn R

 
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Posted 12 June 2011 - 03:55 PM

Hmm...what I was hoping to do was go through and summarize one entry per line all the top two. Then I wanted to edit my first post to keep the list there and I'd update it periodically. That way the list would be easily findable without a newbie having to wade through tons of replies. But since I can't edit the top post anymore, I'm not sure how to proceed. I don't really want to keep starting a new thread. I'd like to keep it in the forum where it is searchable and indexable. Any ideas anybody?


I apologize. Adding to your thread was meant to be positive...sorry it wasn't what you wanted.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#52 Coinkey

 
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Posted 12 June 2011 - 04:37 PM

1. If you pretend the center aisles don't exist, shopping can actually be extremely easy. Meat, Produce, rice aisle, dairy section, spice section and household items aisle. That's instead of being a detective and getting frustrated with everything you put your hands on.

"What? I can't eat one pot KD? You mean I ACTUALLY have to COOK a meal? With separate pots, seasonings and get creative? WHAT?? What a shame! How TERRIBLE! Whatever will I do! Having to eat things like steak and baked potatoes or honey chicken and rice ? Oh, what a world!" :P :D - That's what I say to people who say it must be sooo hard and boring for me.


2. If you are still experiencing trouble, chances are you need to look at other culprits like soy (EVIL EVIL EVIL SOY), dairy, eggs etc.


I like the idea of using a stick and beating people like pinatas.
  • 3
Self diagnosed as gluten free as all tests were negative and the doctor was completely useless.

Gluten Free since June 2010
Suspecting soy and milk as of June 2011


#53 GFinDC

 
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Posted 12 June 2011 - 04:47 PM

Hmm...what I was hoping to do was go through and summarize one entry per line all the top two. Then I wanted to edit my first post to keep the list there and I'd update it periodically. That way the list would be easily findable without a newbie having to wade through tons of replies. But since I can't edit the top post anymore, I'm not sure how to proceed. I don't really want to keep starting a new thread. I'd like to keep it in the forum where it is searchable and indexable. Any ideas anybody?


Hi Korwyn,

I have wondered about stickies for the forum also.
Seems like a good thing to do. I think I read once that the thinking was it would discorage new people from asking questions and getting involved. I don't know if that is true or not.

I have a couple ideas though.

We could edit our profiles signatures and add thread links to them. So perhaps a tips thread like this could be in our sigs. Or threads on cooking tips, casein intolerance or other topics. I haven't tried that so I don't know if it works.

ANother thing I had thought about was setting up tags for threads. We could tag threads with a code for certain topics when we think the are especially helpful threads. Then people could search for that tag to find related threads. It could BE something simple like ***+=casein, or ***+=testing, or ***+=getting started.

People could search on those tags to find threads on the topic. The forum search tols works, but sometiems it gives so many results, most of ehich are unimortant thjreads or even old threads that new peope might find it hard to wade through all that to find the good info. So tags could help I think.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#54 psawyer

 
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Posted 12 June 2011 - 05:33 PM

I sent a note to the "Boss" that you all are asking about this. I don't know if its doable or desired.

The real boss is Scott (admin), but I am looking into this. Some things happen instantly--this is not one of them. B)
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator

#55 Korwyn

 
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Posted 13 June 2011 - 08:14 AM

Gee, and here I've been beating them with a stick like a pinata until the gluten all falls out!!

We didn't I think of that!!? My family didn't listen to me either. a niece did start on the gluten free diet because she was in so much pain nd miserable.


:lol: :lol: Now you have gluten floating EVERYWHERE! :)
  • 0
Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#56 Korwyn

 
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Posted 13 June 2011 - 08:18 AM

I apologize. Adding to your thread was meant to be positive...sorry it wasn't what you wanted.



No you didn't misunderstand! It was positive and was what I was hoping for! I just didn't realize that this particular forum software wouldn't allow me to edit my top post after 30 minutes.

I wanted to keep the discussion going, but have the very first entry (my original one) be a 'summary' of all the top two (or three) pieces of advices that everybody had given. I would then update that periodically so that it wouldn't get stale so that new visitors could review the thread, but they wouldn't have to read through all the chit-chat to glean the tidbits unless they really wanted to.
  • 0
Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#57 GlutenFreeManna

 
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Posted 13 June 2011 - 08:32 AM

No you didn't misunderstand! It was positive and was what I was hoping for! I just didn't realize that this particular forum software wouldn't allow me to edit my top post after 30 minutes.

I wanted to keep the discussion going, but have the very first entry (my original one) be a 'summary' of all the top two (or three) pieces of advices that everybody had given. I would then update that periodically so that it wouldn't get stale so that new visitors could review the thread, but they wouldn't have to read through all the chit-chat to glean the tidbits unless they really wanted to.


Maybe instead of editing the top post you could just make a new post with all the answers given and ask the mods to make it a sticky? Or if they can't do a sticky, you can just post a reply everyday to keep it bumped up to the top. I've seen many forums where they do that by just posting "bump" as a reply. I know that's a lot of work for you to keep track of it but maybe if you do it long enough and enough peopel like it, they would make it a sticky for you. ;)
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#58 Korwyn

 
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Posted 13 June 2011 - 09:05 AM

Well (as a former board op) the bump thing gets annoying for people after a while because they don't know if it is just a 'bump' or if it's new useful content. Plus it starts to tick off moderators after a while. And if you have one thread that does it, pretty soon some people start doing it to all their threads because they are sure their thread is worthy of being at the top. =) Some threads just need to die though! :blink:

Also the bottom post summary is workable to a degree, except that if people go to the 'newest post' and the newest post isn't the most current summary (and it is two or three pages back), they spend more time looking for the content than I was hoping for.

I know when I started on this journey, I was afraid, frustrated, relieved, overwhelmed, and inundated with more information than I could handle processing. I was mentally not in a good place from the gluten and soy and in some ways I just wanted reassurance and sage advice. I could google and find things out, but what I needed/wanted to know was exactly what I'm trying to put together here. I wanted to be able to ask, "You've been here, what is the most important thing I need to know?"

I was so very blessed that a friend with which I went to high school, who's husband and son have celiac disease gave me gluten-free Living for Dummies, and got me to our local GiG meeting and I was able to ask those questions face to face. But many people aren't that fortunate. And for a lot of us, it seems that by the time we get here we need reassurance and simple things to hang onto to get us through those first overwhelming days and then the ups and downs.

That was why I was looking for the top post idea. Simple and easy to look at.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(






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