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Newbie Survival Kit


Guest nini

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Guest nini

After 3 years of this, I have put together a large zip file of lists and articles that are very helpful to the newly diagnosed celiac.

If you are interested in having a copyof this survival kit e-mailed to you

PLEASE E-MAIL ME AT nisla@comcast.net

in the subject line put "Request Newbie Survival Kit"

this is a large file and it's just helpful stuff I have compiled over the past three years. It includes the Delphi list and several Restaurant menus, School supplies, Candy, articles, information that you can print out and share with others to help explain this diet and the reason for it.

If you have a cable modem it will be a fairly quick download, but if you are on dial up, be prepared to let it sit for a while!

disclaimer:

I did not come up with this info all by myself, I've compiled it with the help of other helpful celiacs over the past two years, and it's all been helpful to me. Also, this file is just a guideline, as always you will need to make your own decision on what works for you and what doesn't.

also, it's a zip file so you will need a program like pk unzip to open it... or any program that opens up archived files.


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jaten Enthusiast

Request has been sent. Golly so many great folks here.

I can see the headlines now.....

Scientists Discover New Symptom of celiac disease: Extreme Kindness & Generosity!

minibabe Contributor
I can see the headlines now.....

Scientists Discover New Symptom of celiac disease: Extreme Kindness & Generosity!

That is all I have recieved.....except from doctors <_<

I love everyone here! It is such an amazing website :D

Amanda NY

Guest nini
Request has been sent. Golly so many great folks here.

I can see the headlines now.....

Scientists Discover New Symptom of celiac disease: Extreme Kindness & Generosity!

it's my pleasure to help... I relied on the kindess and generosity of others when I was first dx'ed too...

Guest nini

bump... just in case any newbies haven't seen this...

ebrbetty Rising Star

nini...how kind of you..I wish someone offered this to me last month. your always so helpful

Lisa Mentor

:):):) That is really cool. I sure wished that I had that in August. I know that it will be a great help to all the newly diog. Kinda pay it forward. Very cool. Thank you for your time to do this.

Lisa


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  • 3 months later...
Chako Apprentice

What is the Delphi list?

And would this survival kit be good for a Canadian? :)

Lister Rising Star

not a newb but still could be helpfull, i dont need the delphi lists though but anything else is kewl

Guest nini

Lister, I thought I already sent you this... But maybe it was just the delphi lists... I'll send it again.

What is the Delphi list?

And would this survival kit be good for a Canadian? :)

I suppose so, just e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit" and I'll send it... and you can judge for yourself if it's useful for a Canadian...

Kaycee Collaborator

Nisla, I am a New Zealander, (have only been diagnosed since February) so not too sure how much of the kit would be useful, but would like to have it sent to me.

The gluten free forum has been a life saver and wonderful to follow, and I am getting to feel I know quite a few of you all.

Your picture is a bit scary, but hey you obviously have a heart of gold. And when I see your picture with your piece of advise it is comforting.

I must admit that when first diagnosed, I thought coeliac would be a piece of cake, and that with everybody saying to watch this and watch that, I thought they were being a bit too severe. But hey, everybody was right, and I do have to be that careful. I never would've thought I would 've been so sensitive. Most of my immediate family have cast iron stomachs, and I was so used to having quite good health, apart from the diahrea. But now I have arrived here to where any little bit of gluten manages to keep me grounded for a few days, it is quite scary.

This sight is proving to me that I am now on the right track for me, trying to eliminate all manufactured products, and start mostly from scratch. I don't need the treats, as they are not always weight friendly, and I do carry a bit of excess weight. But sometimes I tend to push the boundaries, and that is when I get unstuck, and get to know the loo intimately again, but I am determined to get past that.

I'm quite proud to say, last night was my first dining out in a restuarant for a few months, it was my 49th birthday, and I am happy to say, I survived without any reactions what-so-ever, but I did push boundaries, luckily nothing untoward happened.

Thanks again Nisla.

Daxin Explorer

Bump. Do not need the kit. Just trying to help all those other newbies out there who may be looking for answers.

Guest nini

Kaycee, I got your e-mail, you should have the kit by now... thanks for your comments!

  • 4 weeks later...
Guest nini

Open Original Shared Link

Attention!!! I now have uploaded the Newbie kit to my website! Click on the above link, scroll down until you see the link for Newbie Survival Kit, you can then just simply download it on your own computer!

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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