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Your Top Two Pieces Of Advice


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#31 GrEyesSmilin

 
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Posted 05 June 2011 - 12:05 PM

Being one of the newbie Celiacs you're trying to educate, I wanted to say "thank you."

I'm rather newly diagnosed (about a month ago), there are still a lot of things I'm not sure of. Now that my brain fog has cleared, things will definitely get easier, though... lol
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#32 a1956chill

 
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Posted 05 June 2011 - 01:19 PM

Being one of the newbie Celiacs you're trying to educate, I wanted to say "thank you."

I'm rather newly diagnosed (about a month ago), there are still a lot of things I'm not sure of. Now that my brain fog has cleared, things will definitely get easier, though... lol

Welcome to the forums GrEyesSmilin :D
  • 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


#33 sb2178

 
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Posted 05 June 2011 - 01:52 PM

3. It's okay to throw a few temper tantrums. Just don't do it at the innocent kid who asked if you wanted an ice cream cone after you confirmed the gluten-free status of your mint chip. Really. Go home, and then have your melt down.
  • 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?

#34 Jestgar

 
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Posted 05 June 2011 - 04:30 PM

3. Break the rules! Have anything you want for breakfast, not just cereal.
  • 1
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#35 Yup

 
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Posted 05 June 2011 - 07:47 PM

1. If you are just diagnosed, ask for a week off from your doctor. Go through your pantry. Start exploring your food options,sleep and give yourself some mental time to adjust.

2.Your body needs the best food now....and I'm including good wine! :D Instead of going for a cheaper red wine, splurge on something better all the time. In reality there is no truth in fast and efficient - something or someone is ALWAYS bearing the brunt of that thinking. It is a man made modern notion that we as a society bought willingly. Life isn't an assembly line, but we have tranposed this linear thinking and it has effected all parts of our society. Look at how our food is prepared, how our school systems are being run, how many doctors are treating patients...we treat everything like we do cars. Quick and linear with one answer. Celiac is a disease which doesn't fit this linear thinking. You will have to educate your doctors, your friends and family. You are now a celiac researcher, so don't be afraid to speak up and educate. Remember anything worthwhile takes time. Recently, to help me with my own life, I found Stephanie O'Dea. Google her. She did 365 gluten-free recipies in her crockpot and they are posted online. My family loves her rotisserie chicken.
  • 1

#36 mommida

 
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Posted 06 June 2011 - 05:27 AM

1. You will find out who is truely your friend.

2. Be prepared to drop some "old friends". If the person was happier when you were sick, and standing in your way of getting better that's someone you need out of your life.
  • 2
Michigan

#37 UpbeatPete

 
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Posted 06 June 2011 - 06:09 AM

1. You will find out who is truely your friend.

2. Be prepared to drop some "old friends". If the person was happier when you were sick, and standing in your way of getting better that's someone you need out of your life.



Unfortunately, this is very true. Don't let it bother you though, feeling healthy is most important right now. Do whatever it takes to get back to being you. You might offend someone because you won't eat their cooking, but if they really care about you, they'll get over it. If not, their loss.
  • 1

#38 anabananakins

 
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Posted 06 June 2011 - 03:57 PM

1. This is one of those 'all or nothing' things. You cannot have any gluten again, ever. But don't try and wrap your head around this all at once. Take it one day at a time, and those gluten-y products start vanishing from your improving selective vision.

2. When eating out (or with other people) judge your audience. What I tell people about what I can and can't eat depends on the situation and how receptive I think they'll be. I don't care if I'm not being scientifically accurate, I just want to get out without getting sick or making a huge fuss. If it's easier to imply that I'm just not hungry, am trying to lose weight, will start throwing up, or will go have peanut-style allergic reaction, so be it. It's good to accurately educate people, but it can get boring and exhausting.

(I was away at a 2 day training thing last weekend and I had to cater for myself. Every meal I sat down with my own, self-prepared food while the other 11 people at the table ate the catered food. They were supportive and understanding and I didn't get sick, but I'm an introvert and my god was it tiring having so many conversations revolve around me)
  • 1

#39 aeb

 
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Posted 06 June 2011 - 05:42 PM

1) Remember you get the sick feeling after eating gluten, the people offering you suspicious (or openly) gluten filled foods....they only get the good feeling of sharing with you

2) Its important to be comfortable and healthy, it is not necessary to justify the gluten free diet (or any other).
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#40 Marilyn R

 
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Posted 06 June 2011 - 05:55 PM

Great responses, everyone. Here's my other advice.

3. Make food cooking and preparation a top priority. Your health depends on it.

4. Buy a pressue cooker or request one as a gift and learn how to use it (5 lb. stainless steel is the bomb!)

5. Clean out your silverware drawer and utensil drawer or container. Bleach or replace the dividers. It is utterly amazing where those old bread or cracker crumbs landed. (CC! :ph34r: )
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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.

#41 sb2178

 
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Posted 06 June 2011 - 08:07 PM

1. If you are just diagnosed, ask for a week off from your doctor. Go through your pantry. Start exploring your food options,sleep and give yourself some mental time to adjust.

2.Your body needs the best food now....and I'm including good wine! :D Instead of going for a cheaper red wine, splurge on something better all the time. In reality there is no truth in fast and efficient - something or someone is ALWAYS bearing the brunt of that thinking. It is a man made modern notion that we as a society bought willingly. Life isn't an assembly line, but we have tranposed this linear thinking and it has effected all parts of our society. Look at how our food is prepared, how our school systems are being run, how many doctors are treating patients...we treat everything like we do cars. Quick and linear with one answer. Celiac is a disease which doesn't fit this linear thinking. You will have to educate your doctors, your friends and family. You are now a celiac researcher, so don't be afraid to speak up and educate. Remember anything worthwhile takes time. Recently, to help me with my own life, I found Stephanie O'Dea. Google her. She did 365 gluten-free recipies in her crockpot and they are posted online. My family loves her rotisserie chicken.


I like the sentiment, and agree with the assembly line metaphor. But alcohol is really not very good for the sore abused gut that is in a newly diagnosed celiac patient. It encourages leaky gut, and food sensitivities. Sorry, folks. Give a couple months, then enjoy all that lovely port and wine, freshly made mojitos, gin and tonics, and cider.
  • 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?

#42 Korwyn

 
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Posted 06 June 2011 - 11:14 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?
  • 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! :(

#43 jenngolightly

 
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Posted 07 June 2011 - 10:22 AM

1. Keep a food diary
2. Find a support network (like celiac.com)
  • 2
Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#44 Skylark

 
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Posted 07 June 2011 - 02:32 PM

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.

I didn't get to do #3 and #4.

3. Always have an "emergency" stash of nuts, trail mix, a gluten-free food bar, or some other non-perishable, filling snack in your purse, knapsack, car, or desk drawer at work. If you want to go somewhere on the spur of the moment, you don't have to worry so much about food. I'm sort of like a squirrel with Larabars stashed everywhere. :lol:

4. If money is tight, remember that expensive specialty gluten-free foods are really not necessary. They're nice to have, but you can always go cheap with rice or potatoes and you have fewer chances of cross-contamination too. "Normal" ice cream or popsicles and naturally gluten-free candies are much cheaper sweet treats than expensive gluten-free cookies too.
  • 1

#45 WinterSong

 
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Posted 08 June 2011 - 06:07 AM

I have one about relationships/family members that I found to be really important, and this is just from my experience:

Remember that anxiety is contagious. If you continually freak out about what a big change it is, people around you will start getting edgy, too. It's a big change and a lot to take in for loved ones, as well, and I've found that people are much more open to receiving information and willing to ask questions when I stay calm and level-headed.
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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







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