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The Best Advice Or Info About celiac disease You Have Gotten From


Jnkmnky

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luvs2eat Collaborator

Ooooh... I almost forgot. One of the BEST things I learned on here was that the macaroni in Kraft Mac and Cheese isn't gluten-free, BUT THE CHEESE POWDER IS!!!

My DD (diagnosed last year) was the happiest to learn that!! You can buy it in a shakey can like Parmesan cheese in some groceries!


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  • Replies 67
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Canadian Karen Community Regular

Another thing!

I learned here that Swiss Chalet chicken, dipping sauce, baked potato and sour cream are all gluten free! I thought Swiss Chalet was lost to me forever because I just assumed that the sauces they had would have gluten in them. Of course their gravy does have gluten in it, but the dipping sauce is fine along with their chicken! Yipee!

Karen

ianm Apprentice

ALTOIDS!!!!

Canadian Karen Community Regular
ALTOIDS!!!!

LMAO! :lol::lol: You had a truckload delivered, didn't you!!!!! ;)

Hugs.

Karen

Jnkmnky Collaborator

PF CHANG'S has a gluten free menu.... YUM!!!!

Classico alfredo sauces are gluten free. My kids really like them, but they have a bunch of stuff we're avoiding so we only have them once in awhile.

chrissy Collaborator

i can't think of which advice has been the best-----but i loved it when vincent posted the picture of the gluten free cocoa pebbles box. the front of the box is different from the old ones, so i knew what to look for----and found them!!!! the lists that people have sent me have been helpful. just knowing that i can come on here and ask a question about celiac and get answers is wonderful.

christine

tarnalberry Community Regular

lots and lots of things. lots and lots of little things that add up to make my life easier. thank you - to everyone!


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kabowman Explorer

My number one thing is from Richard: I now use BBQ salt, that I found and modified, for everything - his suggestion for my missing real BBQ. Made grilling fun again.

But along with that is all the support!

jaten Enthusiast

THANK YOU, EVERYONE!!! I cannot imagine where I would have been these last few mos. Still glutening myself regularly, no doubt. Either that or choking down the yucky foods.

This board recommends great brands....Kinnikinnick, Pamela's, Enjoy Life, EnviroKidz....

This board offers delicious recipes.....Nini's chicken, and so many, many more.....

This board offers tremendous support....

Hey, and while individually, I think we all have some struggles, collectively we're very intelligent.

I don't think CC ever would have occurred to me without all of you, eventhough it's a very real problem for me.

I, too, hesitate to mention names because I have learned so MUCH from so MANY, but I also want to thank Elonwy for offering advice on how to use the Triumph dining cards. (When I do eat out again, I know I'll use her tips with my new cards).

I'm a lucky Celiac. Y'all are the best :P

Judyin Philly Enthusiast

WOW THANKS GUYS :)

I haven't been in this thread before and was overwhelmed by the nice comments people posted about me and others..

Let me assure you all, it came at a very good time for me.

I'll have to regroup and post later...I just want to say that 'THIS FORUM HAS BEEN A LIFE LINE TO SANITY FOR ME ON THIS JOURNEY OF SELF-DISCOVERY AND 'BREAKING THE CODE' :lol: OF CELIAC DISEASE.

NO-- not the Da Vinci Code---won't go into religion--your all safe here :lol:

GOD BLESS YOU ALL FOR AWAYS BEING THERE WHEN I NEEDED SUPPORT! :):):)

JUDY IN PHILLY :)

Rikki Tikki Explorer

I can't even remember how I found this board, but I have been so thankful many times. There are so many of you that have helped me through many trials and errors, items to check etc. And many of you that have made me laugh. I think initally KaitiUSA and celiac3270 held me up through the very worst of it, but many thanks to all

  • 3 months later...
AndreaB Contributor

I had never even heard of celiac before finding this site. I had originally been searching for wheat allergies or intolerances. Learned about enterolab and had that testing done. Found out 3 of us are gluten intolerant. Never even went through the doctor. I would like to thank Scott for putting this site and forum up. I've learned a lot and made a lot of friends.

emcmaster Collaborator

This board has been a lifesaver.

One of the biggest things I learned was CC issues and how to get hubby to be more careful (I use the rat poison analogy all the time now!)

Big thanks to everyone that has helped!

Sarah8793 Enthusiast

This group has been so supportive with information and emmotionally for me. If it wasn't for all of you I would feel so alone and frustrated. It is comforting to know that there are people here who care and will help me. And I hope that I can help others in return.

Sarah

jayhawkmom Enthusiast

I am still very new to the Celiac/Gluten free world. So, I'm really getting a wealth of information from this thread alone! Thanks for starting it!!!

taz sharratt Enthusiast
In light of recent arguments, let's each think of some advice or info you've received from a poster on this board that helped you deal with Celiac disease. It's not necessary to remember the poster's name if you can't. Just let others know the advice or info and make sure it came from someone here.

For me... I learned that Post Cocoa and Fruity Pebbles were gluten free *I have children.

Also, that chapsticks need to be checked and so does shampoo. Also, ordering on line from Kinnikinnick is safe and Chebe bread is great. Modified Food starch doesn't mean gluten.... check the source!!! Opened up a lot of banned food choices for us!

If I wasn't a member of this board, I don't know that I'd know these things.

Thanks everyone!

This thread has great potential for being a newbie resource! :)

queen of hearts for telling me about wheat. ursula, well for nearly every question ive asked, talenberry for the right calcium. carla b for advice about the kids. everyone on this board is super nice and will share any info freely with anyone who asks, youve all been really good to me. thanx

Mia H Explorer

I am so thankful for this site. Without it I would have tested negative on a blood test and been sick the rest of my life. But now I tested with enterolab and found gluten and casein intolerances and that made all the difference.

Also I found out I get the burning from tapioca and I'm sad because it's in all Bette's bread recipes and kinnickinick. But where on earth would I have learned about that!

I am thankful to all of you! and Nini and Carla B especially. Carla has a similar enterolab profile to me and that makes me feel like I'm not the only person in the world like this. She has given me the courage to believe that it is not all in my head because I am "just" gluten intolerant. Also, Tom, I don't know his signature name, but he was very welcoming.

Also wondering what Carrie's breadstick recipe is and Nini's chicken recipe?

Oh, and thanks for Tinkyada pasta! I thought my spagetti days were history!

and last, my husband has responded positively to gluten-free, he has been tired all his life and had gas and gut rot. He is becoming a whole new person and it is very exciting. His dad was like that his whole life so my husband thought he had to be too. His dad probably had a gluten/celiac deal too. Too bad he died of colon cancer at 62. Thankfullly my husband found out and can do something about it to positively affect his life before it was too late.

Mia

tiredofdoctors Enthusiast

I have gotten so much GREAT advice and/or information from the people on this forum for the past year that I can't even BEGIN to say what is the best . . . . The people I have met, the friends I have made -- they have been a Godsend. I can honestly say that I don't know what I would have done without them . . . and don't know what I would do without them now.

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      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
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