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Korwyn

Your Top Two Pieces Of Advice

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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:


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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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!


<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.

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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.


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

Celiac.com - Celiac Disease Board Moderator

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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.


Gluten free Oct/09
Soy free Nov/10

 

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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)


"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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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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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


Gluten free Oct/09
Soy free Nov/10

 

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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.


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?

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3. Break the rules! Have anything you want for breakfast, not just cereal.


"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.

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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.

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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.


Michigan

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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.

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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)

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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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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: )


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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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.


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?

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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?


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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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.

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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.


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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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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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.


Michigan

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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.


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!!

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


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.

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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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