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Learning About It For The First Time


J-Man

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Canadian Karen Community Regular

Just wanted to note that on the link that I provided for you, there seems to be some inaccurate information as far as I am concerned regarding children with celiac disease. I read something in there about some children being able to tolerate gluten after "5 years" off gluten, or something along those lines......WRONG!!!!!! Once a celiac, always a celiac..... I will look for a better link for you now........

Karen


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Canadian Karen Community Regular

Here's one:

Open Original Shared Link

Karen

Canadian Karen Community Regular

If you read through these posts, you will definitely see a trend!!!! :P:D

Open Original Shared Link

Karen

J-Man Newbie
Well you better be careful because you will have the single women with Celiac after you, lol!!!

<{POST_SNAPBACK}>

*smirk* I should be so lucky ;-)

J

Canadian Karen Community Regular

Here is a very good one:

Open Original Shared Link

Karen

kbtoyssni Contributor

You should read Dangerous Grains if you want to know all about the disease. They talk about the ethnicities that are most likely to have celiac disease in it. Grains were first grown in the middle eastern countries. Since celiac disease is genetic, those cultures have had longer for the celiac disease genes to be eliminated from the gene pool.

I'm a celiac disease newbie (dx a month ago) and I figured it out after being diagnosed with fibromyalgia. I tried an elimination diet to see if any foods aggrevated the FM and found that wheat made me so, so sick. And so did barley. I did get the blood test done and it was covered by insurance. Unfortunately you have to be eating gluten to test positive and I'd only been eating it for 4 or 5 days so it was negative. But I don't care. I know if I eat gluten I'll be on the floor with stomach cramps too tired to get up and this will last for three days. My FM symptoms get much worse, too.

PS It's really great that you are so open to learning about the disease. That girl doesn't know what she's missing

Carriefaith Enthusiast
I just met a girl with Celiac, and I want to do whatever I can to make her happy.
That is very sweet :) If you are cooking for her, there are a few things that you should know (someone may have mentioned this already). In addition, to making sure the food is gluten-free, make sure that you clean all counters, dishes, silverwear, pots and pans very well. I find crumbs on stuff like that all the time. Also, make sure that you use separate condiment jars, deep fryers, toasters, ect.

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Nantzie Collaborator

I've got to throw my two cents in here. I'm still waiting for my test results, so I'm not sure if I have celiac yet or not, but I have been dealing with digestive issues since I was a teenager.

When it comes to people in your life, be they friends, family or significant others, the most important thing is when you get sick, just to have someone to talk to who takes it seriously, knows you're not a drama queen, and will cheer you up, or bring you something from the store, offer to stop by with a movie to watch or just call and see how you're doing, or understand when you just want to be alone in your misery, but not hold it against you when it's over.

When you get sick from something like this, it can be humiliating. Having friends who are understanding is a real treasure. Because there are people who tell you it's all in your head, or act like you're somehow at fault.

You know how they say that everyone has different kinds of friends? You've got the friends that you can hang out with, but not really talk to about something serious. Then there are the friends who you can talk to, but when the chips are down they aren't really going to do anything to help. And then there are the friends who will drop whatever they're doing to help when you need it.

Well, when you have digestive issues, or any kind of chronic condition, there's an even closer circle of friends; those you can call when you're sick. Most people aren't tough enough.

If you can just be her friend and be understanding of her life, even if you never have a romantic relationship, I'm sure she'd count herself lucky to have you in her life.

And like I tell my single guy friends -- Girls know girls. So the more girl FRIENDS you have, the more potential GIRLFRIENDS you'll meet. B)

Nancy

J-Man Newbie
You should read Dangerous Grains if you want to know all about the disease.  They talk about the ethnicities that are most likely to have celiac disease in it.  Grains were first grown in the middle eastern countries.  Since celiac disease is genetic, those cultures have had longer for the celiac disease genes to be eliminated from the gene pool. 

Well... the book arrives Monday I think :)

J

debmidge Rising Star

J-Man, you asked if you can be born with Celiac .... as per a prior post, it's genetic and has to be "triggered." As an example, my husband developed his at age 27 and was misdiagnosed (like a lot of celiacs are) with IBS until he was 53. In those "lost" years he developed other health conditions and it robbed him of youth and health. It runs in families and there's no cure other than diet. The sponsor of this forum, celiac.com has good info on celiac (I guess thru the Site Index).

Some families that have celiac disease get their non-celiac members "gene tested" to see if they have the genetic potential for this disease.

My husband did not have a problem getting tested for this in 2003, but from 1977 to 2003 he had a lot of gastroenterologists who obviously did not know that he had celiac and one actually told him to get mental help because he couldn't find anything wrong with him (this gastro was obviously doing the wrong tests!!). Finding a doctor who is sharp enough to diagnose celiac disease is the hardest part of this problem as most don't know about celiac or feel that it's so rare that this patient can't have it.

I work with a man who came down with celiac disease at age 72 after a bad bout of pneumonia. Since he didn't go very long before he was diagnosed, he doesn't have many symptoms....only when he cheats and eats gluteny bakery stuff. When he brings it into the office I reprimand him.

My husband's sister probably has celiac disease,but she's ignoring it but grumbles about her stomach aches all the time.

I don't have celiac disease but I read Dangerous Grains and have to say it made me want to stop eating Gluten ASAP.

Best wishes

D.

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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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