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Your Top Two Pieces Of Advice


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#1 Korwyn

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Posted 03 June 2011 - 02:58 PM

I haven't seen an identical thread, so I thought this might be an interesting thing to try.

Here's the setup! :)

Each poster posts their top two pieces of advice! Simple enough. With all that you now know and have learned and experienced since you went gluten free, what are the TWO things you wish you had known at the outset?

Don't worry if you post something that is the same or similar to what someone else posted, because it will help reinforce that for the newly diagnosed. I hope we can keep them short so that they will be easy to remember.
  • 3
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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#2 Korwyn

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Posted 03 June 2011 - 03:00 PM

My top two:

1. Don't panic. It will be alright. As overwhelming as it seems there are thousands upon thousands of people who are willing to support you and help you through all of this.

2. There will be ups and downs. Sometimes big ones. It's OK. Just because it seems like you are suddenly going backwards doesn't mean to give up. Just remember that there is now an upside, and you ARE getting better.
  • 2
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! :(

#3 a1956chill

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Posted 03 June 2011 - 03:07 PM

I haven't seen an identical thread, so I thought this might be an interesting thing to try.

Here's the setup! :)

Each poster posts their top two pieces of advice! Simple enough. With all that you now know and have learned and experienced since you went gluten free, what are the TWO things you wish you had known at the outset?

Don't worry if you post something that is the same or similar to what someone else posted, because it will help reinforce that for the newly diagnosed. I hope we can keep them short so that they will be easy to remember.

1.Get tested for Celiac ,,blood and biopsys,,, BEFORE going gluten free.

2 ALWAYS,ALWAYS,ALWAYS not matter what kind of test Get copys of your test results and reports!! .
  • 2

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


#4 WinterSong

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Posted 03 June 2011 - 03:11 PM

My top two:

1. Don't panic. It will be alright. As overwhelming as it seems there are thousands upon thousands of people who are willing to support you and help you through all of this.

2. There will be ups and downs. Sometimes big ones. It's OK. Just because it seems like you are suddenly going backwards doesn't mean to give up. Just remember that there is now an upside, and you ARE getting better.




I completely agree with your top two. It was actually good for me to read #2 today, because I feel like a mess. I've been sick and bloated for the past three days, not knowing where this reaction is coming from. I've gotten rid of a lot of foods recently that I thought could be causing my frequent reactions, but maybe because my body is still healing, it's still having trouble digesting in general.

On that note, I'd like to add something -

Have patience. There are many things that you will have to figure out; you will naturally find road blocks ahead. Practice patience and have faith that it will get easier.
  • 0

Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#5 love2travel

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Posted 03 June 2011 - 03:13 PM

Intriguing topic idea!

Hmmmmmmm...

1. As above, don't panic! I did just that. I recall standing in front of my pantry, crying, because I just did not know what to do. Suddenly gluten seemed to be in everything! So, what did I do? I went out on a binge, buying a whole host of gluten-free processed snacks because I felt sorry for myself. Very few tasted good, let alone good for me!
2. Research like crazy! Your doctor and other health care professionals likely won't do this for you. The nurse at my doctor's office called me to say I had Celiac. I was in shock and ill equipped with NO information. So, I have become a detective, doctor, advocate and police officer. Learning to read labels immediately is a must. Do not necessarily trust a product that says GLUTEN FREE because it can still contain gluten. Call companies regularly to question their cleaning practices and confirm whether their products are or are not gluten-free. I have seen several websites that say their stuff is gluten-free but upon calling them have received different stories.

I'm biting my lip, refraining from listing more (although I have lots). So, if no one mentions them I'll add later. :lol:
  • 2
<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.

#6 mushroom

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Posted 03 June 2011 - 03:13 PM

1. Be aware that most doctors don't know much about celiac disease/gluten intolerance.

2. Gluten might not be your only food intolerance.
  • 3
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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#7 a1956chill

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Posted 03 June 2011 - 03:15 PM

1. Be aware that most doctors don't know much about celiac disease/gluten intolerance.

2. Gluten might not be your only food intolerance.

sad , but so very true :(
  • 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


#8 Jestgar

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Posted 03 June 2011 - 03:18 PM

1. Hang on, it gets easier.

2. Read the label, even if you read it last time.
  • 2
"But then, in all honesty, if scientists don't play god, who will?"
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#9 sb2178

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Posted 03 June 2011 - 03:31 PM

1. Read the label before you buy it. Read the label AGAIN before you eat it. Sneaky small print...

2. Buy a rice cooker. It took me waay too long to buy one.
  • 1

2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#10 GlutenFreeManna

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Posted 03 June 2011 - 03:40 PM

1. Never, never ASSume something is gluten free. If eating in a restaurant ASK the manager or chef about prep and ingredients. If buying pre-packaged food, check the label and do your research if an ingredient looks questionable. A simple search of "is XXXX gluten-free will usually turn up some answers." Do be aware of outdated responses however and check the date of a post before you assume it's okay. Goes back to the never assume anything is safe.

2. Keep it simple with as few gluten-free substitutes as possible in the begining. Cooking mostly natural gluten-free food like meat, veggies, rice and potatoes will not only help your budget but help you heal better, figure out if you are being cc easier and figure out if you have additional food intolerances easier. It could also help if you wait several months to try the gluten-free subs so your tastebuds somewhat "forget" what the gluten breads and gluten pastas taste like. :P
  • 1
A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#11 kareng

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Posted 03 June 2011 - 03:44 PM

Only 2? And brief? You didn't want me to play did you? B)

I like the " Don't Panic". It will be our secret club phrase!

Try to find the humor in the situation, even if you are the only one that thinks it's funny! :D

( this happens to me a lot as you all know)
  • 1

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#12 Skylark

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Posted 03 June 2011 - 04:12 PM

1. You're going to get glutened occasionally no matter how careful you are. It's OK. Pick yourself up and keep going.

2. Don't worry about what others think. There will be people who say you are worrying too much about cross-contamination. You might meet celiacs or people who don't stick to the diet very well and say it's fine to cheat (it's not). You might have family members or friends who will try to guilt you into eating gluten-containing foods they have prepared. Be kind, be compassionate, say whatever it takes, but stand firm and don't poison yourself for someone else!
  • 2

#13 IrishHeart

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Posted 03 June 2011 - 04:37 PM

Good post, Korwyn!
We have "Don't Panic" from a fortune cookie taped to our fridge from 2007--little did we know it would prove to be prophetic.

Only 2??--be brief?? Have you seen my posts?? :unsure: LOL LOL okay, I'll try.

Agree with all those posted thus far, BTW!! ;) especially BE YOUR OWN ADVOCATE & keep copies of your tests and doctor appts. --doctors are woefully ignorant about gluten intolerance and how to deal. And most definitely, keep your SENSE OF HUMOR, no matter how dark some days are. Saved my sanity for sure!

Two I would offer:

(1) Healing takes time. As much as you want it to "hurry up already!!" and stop hurting...there's no time table set in stone. Be patient and never give up. KNOW it is happening. You're going to be all right! :)

(2) Use probiotics. ESSENTIAL for gut flora balance, stopping the big D, the painful C, the nausea, the heartburn--everything. Totally set me straight and I was a mess! :blink:

(3)...oh, all right, I'll be good and play by the rules (geesh, I hate rules :rolleyes: ...pout, pout).. :lol:
  • 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 idiots could fly, the sky would be like an airport.”― Laura Davenport

"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


#14 adab8ca

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Posted 03 June 2011 - 05:21 PM

1) Do not try to replace everything wheat filled with a gluten free alternative. It is not healthy, not practical and most things don't taste that good anyway. Eat fresh naturally gluten free foods (fruit, veggies etc). I wasted SO much time and now basically eat no grains and no processed food and feel much better.
2) Don't rush yourself. The GI Dr. I saw (that never saw a case of celiac like mine) said that I should feel better a few days after going gluten-free. What a stress THAT was since I am 9 months in (feels like years) and still have symptoms (mainly neuropathy). Everyone heals at their own pace, Celiac has no schedule, so be kind to yourself, rest when you have to and embrace the good days!
  • 1
TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#15 Marilyn R

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Posted 03 June 2011 - 05:36 PM

Good post, Korwyn!
We have "Don't Panic" from a fortune cookie taped to our fridge from 2007--little did we know it would prove to be prophetic.

Only 2??--be brief?? Have you seen my posts?? :unsure: LOL LOL okay, I'll try.

Agree with all those posted thus far, BTW!! ;) especially BE YOUR OWN ADVOCATE & keep copies of your tests and doctor appts. --doctors are woefully ignorant about gluten intolerance and how to deal. And most definitely, keep your SENSE OF HUMOR, no matter how dark some days are. Saved my sanity for sure!

Two I would offer:

(1) Healing takes time. As much as you want it to "hurry up already!!" and stop hurting...there's no time table set in stone. Be patient and never give up. KNOW it is happening. You're going to be all right! :)

(2) Use probiotics. ESSENTIAL for gut flora balance, stopping the big D, the painful C, the nausea, the heartburn--everything. Totally set me straight and I was a mess! :blink:

(3)...oh, all right, I'll be good and play by the rules (geesh, I hate rules :rolleyes: ...pout, pout).. :lol:


1. You may get some really wierd blood test results where a specialist advises you to go to another specialist based on your blood test results. And when you research why they want to send you, based on those blood test results, you will probably freak out. Save yourself from that. Just ask them to repeat that blood draw. Next time it turns out normal.
So, stay calm it times of turbulent blood tests and ask them to draw your blood again.

2. If you can, make your home gluten-free. You have fewer worries that way.
  • 1
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.




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