Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Your Top Two Pieces Of Advice

Korwyn

Recommended Posts

Korwyn Explorer
Korwyn
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 57
  • Created
  • Last Reply
Korwyn Explorer
Korwyn
Posted
  • Author

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.

cahill Collaborator
cahill
Posted

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!! .

WinterSong Community Regular
WinterSong
Posted

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.

love2travel Mentor
love2travel
Posted

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:

mushroom Proficient
mushroom
Posted

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

2. Gluten might not be your only food intolerance.

cahill Collaborator
cahill
Posted

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 :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

1. Hang on, it gets easier.

2. Read the label, even if you read it last time.

sb2178 Enthusiast
sb2178
Posted

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.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

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

kareng Grand Master
kareng
Posted

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)

Skylark Collaborator
Skylark
Posted

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!

IrishHeart Veteran
IrishHeart
Posted

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:

adab8ca Enthusiast
adab8ca
Posted

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!

Marilyn R Community Regular
Marilyn R
Posted

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.

Mango04 Enthusiast
Mango04
Posted

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.

rosetapper23 Explorer
rosetapper23
Posted

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

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

domesticactivist Collaborator
domesticactivist
Posted

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."

anna34 Enthusiast
anna34
Posted

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. :)

IrishHeart Veteran
IrishHeart
Posted

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

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

:unsure::lol::blink: ditto!

CarolinaKip Community Regular
CarolinaKip
Posted

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!!!!

Yup Apprentice
Yup
Posted

I'm posting later...

GFinDC Veteran
GFinDC
Posted

1 Don't eat soy.

2 See #1 above.

firefightersgal Apprentice
firefightersgal
Posted

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

2. Don't be discouraged. We all slip.

UpbeatPete Explorer
UpbeatPete
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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,745
    • Most Online (within 30 mins)
      7,748
    Barbfh
    Newest Member
    Barbfh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or not??

      By Scott Adams · Posted

      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      How Come Gluten Didnt Bother Me In Italy

      By Scott Adams · Posted

      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.