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Survival Guide For Newbies


celiac3270

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celiac3270 Collaborator

Open Original Shared Link

This is a two week gluten-free survival guide....I thought this would be extremely helpful for newbies. I found it while poking around on the Delphi board. I don't post there, but occasionally poke around for interesting tidbits. It's an adobe file, so you need adobe reader, which if you don't already have, can be downloaded here: Open Original Shared Link. To access this, I think you might also need to be a member of Delphi Forums. Go to Open Original Shared Link to register, and the celiac board there is at Open Original Shared Link.

It's pretty neat, so I wanted to share this :D


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Canadian Karen Community Regular

That's a really useful tool, celiac3270. It will help newbies alot....

Did you ever try the chat section at Delphi? I'm not really into chat rooms, so I haven't tried it, just wondered if it works.....

Again, I am so happy for you that you have found the source of your problems and now see a light at the end of the tunnel.... Life to about to change for the better for you....

celiac3270 Collaborator

Yes--that's what I thought.

I haven't tried the chat. Actually, I did once, but it didn't work. Then I realized that there are specific times. A moderated chat on Monday sometimes in the evening and another unmoderated chat on Wednesday, about the same time. I have yet to try it during a correct time, but would like to. I think a message board is best, since the information is....archived for everyone to read, but a chat in addition to a message board sounds neat.

Thank you :) . I'm going to get packing--unfortunately this is my last day to post before I leave :(

BamBam Community Regular

celiac3270 - thanks for the survival guide - very useful! Looking at that, there is all kinds of stuff available to us - my girlfriend looked at it and says "Hey, he even lists the brand name, so I know what to do when I make something for you!!"

Thanks again

sher311 Newbie

Hello,

So glad I found this site. I'm BRAND new. (2 months) My test results showed that that I was suspicious for celiac. I have no symptoms except unexplained bone fractures, osteopenia with bone loss, I also have a vitamin D def.-malabsorption. Thats it. I've started the gluten-free diet and can't tell a difference- I guess because I didn't feel bad to begin with. After reading some of your symptoms and problems with the weight and felling so bad, I beginning to think that I don't have it. I feel so confused.

I also have barrett's esphougus and Chron's disease, I've never had heartburn in my life, how did I get that? Are their any other symptoms? Thanks for any info!

Sherry

KaitiUSA Enthusiast

There are many symptoms that can come with celiac but you may also have none at all. There does not have to be symptoms for you to have celiac. If you are a celiac, symptoms or not, your intestines are being damaged. It took me about 3 months to finally see a significant difference.I had no symptoms growing up until I had mono which triggered it. Otherwise I never would have known. Malabsorption can be a big things with celiacs because your body damages the villi which take nutrients of food into your blood stream. So then no matter how much food you eat you don't get the nourishment you need. Make sure that no gluten is sneaking in. Check shampoos, lotions, cosmetics etc. I had a accident with some lip balm which ended up having vitamin e derived from wheat and was giving me a reaction. If you have any questions I would be happy to help :D

flagbabyds Collaborator

I love this 2 wk guide it is very useful! I use it all the time and I found it like 4 months ago


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KLTerry Apprentice

Thanks SO much for the survival guide. I'm having such a difficult time sticking to the gluten-free diet. Our funds are so very limited that sometimes, when we run out of gluten-free items, I have no choice but to eat some mac&cheese or romain noodles. This is definitely a rich man's disease.

judy05 Apprentice

I have to disagree about this being a rich man's disease

if you can keep it simple and not buy a lot of the gluten free

stuff you can manage. the only thing I find expensive

are the gluten-free spaghetti and cereal but the rest is mostly

meat, vegetables, and fruit. Once in a while a treat.

I use mostly rice cakes instead of bread and lots of

salads. We just made a Salmon salad today, enough

for a few days and tonight we are having grilled steak

and veggies. Please try not to eat gluten you are just

damaging yourself.

ianm Apprentice

I am so glad I found this site. I found out about celiac and gluten intolerance about a year ago. I spent 36 years struggling with this problem. I went to more doctors than I can count and none of them ever suggested a food allergy. They sure wanted to write me lots of prescriptions though. I finally began to realize what I had when I read the Atkins Diet book. There was a chapter on food intolerances and it described exactly how I felt. After a lot of research and watching what I eat I finally feel alive for the first time in my life. I had gained a lot of weight and was on the verge of becoming a diabetic. Since eliminating gluten I have lost the weight and in perfect health. This disease nearly caused me to lose everything I had but it is good to see I am not alone.

Ian

lovegrov Collaborator

My food bill is actually lower than when I wasn't gluten-free.

I know that gluten-free noodles aren't cheap but home-made spaghetti sauce is VERY cheap. Watch for sales on meat. Fresh, canned or frozen veggies are cheap. Fresh fruit. Buy a bag of uncooked beans for about $1.29 and cook. If you want to get fancy add a can of tomatoes, a little ham, and some spices. Add a salad to it and you have several meals for $1 each or less. One pound of hamburger, two cans of beans (or cook your own), a can of tomatoes and some spices and you have chili. Might cost $1 per serving depending on your serving size. All the Vienna sausage I've ever checked has been gluten-free and I think it's less than $1 per can. Canned tuna is cheap. Add mayo, celery, an egg, and salt and pepper and you have cheap and delicious tuna salad. Eggs where I live are maybe $1.29-$1.49 for 18 of them. Scramble three egs and throw in a smattering of cheese, ham, onions, whatever you like and you can make an omelette for a LOT less than $1.

If you need sweet treats, lots and lots of candies are gluten-free.

Just some ideas. Staying away from gluten is a lot cheaper than what it will cost if you destroy your health.

richard

Guest barbara3675

What a thoughtful thing to do, celiac3270......this thread will help so many new people. I know you are so very young yet, but you should think about becoming a doctor some day specializing in this very subject you are so learned in already. This country needs another good doctor in this subject.

Barbara

ianm Apprentice

My food bill is drastically lower too now that I am gluten-free. By eating protien, mostly green vegetables and certain fruits I can eat a small amount and not feel hungry for several hours. With the high carb, gluten grain diet I would stuff myself and still feel hungry.

Ian

sher311 Newbie

I found that rice krispies, korn pops & ragu speghetti sauce are gluten-free. the noodles are the only thing-so far- that I'm paying extra for.

KaitiUSA Enthusiast

Which rice krispies? They all contain barley in their malt flavoring and so do the rice krispy bars.

Here is a link to the kellogg's dietary special needs list it states at the bottom that they contain barley in them... barley is off limits for us.

Open Original Shared Link

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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