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Your Top Two Pieces Of Advice


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57 replies to this topic

#16 Mango04

 
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Posted 03 June 2011 - 06:56 PM

1. Other people (regardless of who they are or where you are) are not responsible for understanding your diet and providing you with food. Ever. You're now the only person who's responsible for that. Thinking this way will make your life much easier and save you a lot of disappointment at social events, when traveling etc. (Don't worry though, you will find some very special, generous and understanding people).


2. Travel is very, very, very possible on an extremely restricted diet. Travel if that's what you like to do.
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"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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#17 rosetapper23

 
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Posted 03 June 2011 - 10:11 PM

1. Never, ever, ever eat at a potluck!!

2. I repeat: Never eat at a potluck!!!!!
  • 2

#18 domesticactivist

 
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Posted 03 June 2011 - 10:58 PM

1. If it needs to say "gluten-free" on the label, you probably shouldn't be eating it. Eat real, whole foods from trusted sources, not processed crap with "gluten-free" plastered on it.

2. Even if someone is being really thoughtful and makes something "gluten-free" especially for you, unless they have a truly gluten-free kitchen, have replaced their cookware, and are as fanatical as you, it's not safe. Say "no, thank you."
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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.

#19 anna34

 
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Posted 04 June 2011 - 04:48 AM

1. Embrace the change and look forward with excitement to all of the new food and cooking adventures you have before you!

2. If you are doing this for/with your children, the less of a big deal you make of it, the less they're going to resist. It's just food - and food is tasty. We're so lucky that we can change the course of our health through diet alone. :)
  • 2
blood test "borderline" (February 2011)
no further testing
gluten-free (March 2011)
positive response

#20 IrishHeart

 
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Posted 04 June 2011 - 05:49 AM

1. Never, ever, ever eat at a potluck!!

2. I repeat: Never eat at a potluck!!!!!


:unsure: :lol: :blink: ditto!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 CarolinaKip

 
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Posted 04 June 2011 - 06:01 AM

Just two is difficult! :)


1. Eat whole foods and avoid a lot of gluten-free replacement foods in the beginning. Your body will thank you for it.

2. Do not trust a health food or grocery clerk for gluten-free status. Unless it states so on the item and then still read the lable. ALWAYS check it out for yourself! I made this mistake twice! If it says "May contain traces of gluten" IT DOES, don't listen to anyone otherwise!



Love this thread, every single post is great advice!!!!
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How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.
George Washington Carver


Blood work positive 4/10
Endo biopsy positive 5/10
Gluten free 5/10

#22 Yup

 
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Posted 04 June 2011 - 03:37 PM

I'm posting later...
  • 1

#23 GFinDC

 
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Posted 04 June 2011 - 03:49 PM

1 Don't eat soy.

2 See #1 above.
  • 1
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

#24 firefightersgal

 
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Posted 04 June 2011 - 05:28 PM

1. Be your own advocate. Educate yourself and others.

2. Don't be discouraged. We all slip.
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#25 UpbeatPete

 
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Posted 04 June 2011 - 05:47 PM

1) Don't give up, people heal at different rates!
2) People will try to tell you it's not really the gluten or it's in your head; but don't listen! There isn't anyone who knows your body like you!
  • 2

#26 Marilyn R

 
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Posted 04 June 2011 - 06:45 PM

1) Don't give up, people heal at different rates!
2) People will try to tell you it's not really the gluten or it's in your head; but don't listen! There isn't anyone who knows your body like you!


I'm bumping this up because it's a good topic.

Does anybody want to add their third piece of advice? :huh:
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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.

#27 love2travel

 
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Posted 04 June 2011 - 06:49 PM

I'm bumping this up because it's a good topic.

Does anybody want to add their third piece of advice? :huh:


Whew! Was wondering if anyone was going to ask for a third! :P

3. Restaurant travel cards are hugely beneficial in countries where English is not the first language.

What the heck...

4. Don't allow celiac disease to prevent you from going on vacation. Just plan ahead!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#28 mushroom

 
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Posted 04 June 2011 - 08:36 PM

3. Better to go hungry than to eat something about which you are unsure.

4. To avoid going hungry, always have safe food in your purse/pocket and in your car.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#29 a1956chill

 
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Posted 05 June 2011 - 05:46 AM

3. even if your testing comes back negative try a gluten free diet. You may be amazed the "issues" than are resolved by going gluten free.

4.if you continue to have issues consider removing soy from you diet.
  • 1

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#30 IrishHeart

 
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Posted 05 June 2011 - 06:06 AM

oh goody...we're breaking the rule... :lol: :lol: :lol:

3. Give up dairy for the first few months. (the only good advice I got from a doctor :rolleyes: ) Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi and sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. and you may feel as if the gluten-free diet "isn't working." After the villi heal, most people are able to tolerate dairy foods again.

4. Come on Celiac.com and learn from the people who LIVE FULL, HAPPY LIVES with gluten intolerance. You'll learn more here than from any book, doctor or website.

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. B)
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif







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