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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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    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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