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

Jnkmnky

By Jnkmnky
in Coping with Celiac Disease

Recommended Posts

luvs2eat Collaborator
luvs2eat
Posted

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
Canadian Karen
Posted

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
ianm
Posted

ALTOIDS!!!!

Canadian Karen Community Regular
Canadian Karen
Posted
ALTOIDS!!!!

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

Hugs.

Karen

Jnkmnky Collaborator
Jnkmnky
Posted
  • Author

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
chrissy
Posted

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
tarnalberry
Posted

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
kabowman
Posted

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
jaten
Posted

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
Judyin Philly
Posted

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
Rikki Tikki
Posted

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
AndreaB
Posted

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
emcmaster
Posted

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
Sarah8793
Posted

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
jayhawkmom
Posted

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
taz sharratt
Posted
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
Mia H
Posted

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
tiredofdoctors
Posted

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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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