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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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      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
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    • Charlie1946
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