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Your Top Two Pieces Of Advice

Korwyn

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Marilyn R Community Regular
Marilyn R
Posted

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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  • Replies 57
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love2travel Mentor
love2travel
Posted

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!

mushroom Proficient
mushroom
Posted

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.

cahill Collaborator
cahill
Posted

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.

IrishHeart Veteran
IrishHeart
Posted

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)

GrEyesSmilin Newbie
GrEyesSmilin
Posted

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

cahill Collaborator
cahill
Posted

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

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sb2178 Enthusiast
sb2178
Posted

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.

Jestgar Rising Star
Jestgar
Posted

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

Yup Apprentice
Yup
Posted

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.

mommida Enthusiast
mommida
Posted

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.

UpbeatPete Explorer
UpbeatPete
Posted

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.

anabananakins Explorer
anabananakins
Posted

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)

aeb Newbie
aeb
Posted

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).

Marilyn R Community Regular
Marilyn R
Posted

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: )

sb2178 Enthusiast
sb2178
Posted

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.

Korwyn Explorer
Korwyn
Posted
  • Author

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?

jenngolightly Contributor
jenngolightly
Posted

1. Keep a food diary

2. Find a support network (like celiac.com)

Skylark Collaborator
Skylark
Posted

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.

WinterSong Community Regular
WinterSong
Posted

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.

rosetapper23 Explorer
rosetapper23
Posted

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!!

mommida Enthusiast
mommida
Posted

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.

luvs2eat Collaborator
luvs2eat
Posted

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.

domesticactivist Collaborator
domesticactivist
Posted

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

kareng Grand Master
kareng
Posted

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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