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Your Top Two Pieces Of Advice


Korwyn

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Korwyn Explorer

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.


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  • Replies 57
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Korwyn Explorer

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

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

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

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

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

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 :(


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Jestgar Rising Star

1. Hang on, it gets easier.

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

sb2178 Enthusiast

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

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

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

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

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

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

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

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

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

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

domesticactivist Collaborator

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

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

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

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

:unsure::lol::blink: ditto!

CarolinaKip Community Regular

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

I'm posting later...

GFinDC Veteran

1 Don't eat soy.

2 See #1 above.

firefightersgal Apprentice

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

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

UpbeatPete Explorer

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!

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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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