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Always Waiting For This To Kill Me!


alanalynch

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alanalynch Rookie

Does anyone else out there ever think that maybe this is going to eventually kill them even though they are gluten free? I personally am always just expecting the day to come when I find out that yes I do have cancer. I'm only 31 but my mother died of breast cancer when she was 42 (too young) and we have a long list of illness's in my family. All of which I am sure stemmed from celiacs. Too be perfectly honest, even though the gluten free diet is supposed to reverse all the problems, I really don't think I feel as well as the people around me do who don't have gluten intolerance. I never seem to have their healthy glow (unless I use the tanning salon...lol) In fact, looking back, I don't think I ever looked very well. I wonder if this is going to shorten our lives even on the diet.

Any thoughts??


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Mongoose Rookie
Does anyone else out there ever think that maybe this is going to eventually kill them even though they are gluten free?

<snip>

I wonder if this is going to shorten our lives even on the diet.

I suspect you are right. I've been gluten-free now for 3 and a half years. The improvement in my health has been just tremendous, yet there's damage from all the decades before going gluten-free. Some of this is slowly iimproving, some not improving too much at all. But we all die of something. I don't dwell on it. I'm just so glad to have these good years and intend to keep making life the best it can be.

Guest Viola
Does anyone else out there ever think that maybe this is going to eventually kill them even though they are gluten free? I personally am always just expecting the day to come when I find out that yes I do have cancer. I'm only 31 but my mother died of breast cancer when she was 42 (too young) and we have a long list of illness's in my family. All of which I am sure stemmed from celiacs. Too be perfectly honest, even though the gluten free diet is supposed to reverse all the problems, I really don't think I feel as well as the people around me do who don't have gluten intolerance. I never seem to have their healthy glow (unless I use the tanning salon...lol) In fact, looking back, I don't think I ever looked very well. I wonder if this is going to shorten our lives even on the diet.

Any thoughts??

I think it depends on how young you were diagnosed and how much damage was done. I've been on the diet for 17 years, but it took 25 years for a proper diagnosis, so there is a lot of damage done to my joints etc. Having said that, I am now almost 60 (June) and I have no signs of cancer, or any deadly disease. But I am extremely careful of my diet.

I must change that slightly, I have had surgery for Basil Carcinnoma (sp) Skin Cancer, and will be having some more. Doctor says that I was born with the eventuality of that as I am very fair skinned and blue eyed. But whether or not you have fair skin and blue eyes, you are asking for the same thing with a Tanning salon! :o Tans may look nice, but can be deadly.

WLJOHNSON Newbie

Hi,

I'm 61 years old and have had symptoms of Celiac since I was age 8 (though I didn't learn until later that what I had was this geneticaly inherited disease). I started eliminating certain foods from my diet in my early 30s, after suffering with Asthma from the age of 8. Eventually I learned that all grains, all milk and dairy products, egg whites, and yeast were dangerous for me. It took years to get to the point of feeling really well, but now I have more energy than most people around me, and that includes many people who are younger than I.

I think that once you finally learn that sticking to the diet is easier than dealing with the consequences of eating forbidden foods, life gets much easier. The social stigma that I used to feel, when I had to stay away from whatever foods were being presented at a party or gathering, turned into a challenge and quest to take good care of myself, regardless of what others said or thought. This disease has made each one of us stronger, I am sure, or is in the process of doing so!

Now I take my own foods wherever I go, and my family and friends just know that I will do that, because I am sincerely taking good care of myself, so I can be around for years to come. Now my grandson, sister, and cousin have learned that they have Celiac. It is rewarding to be able to help others who have just been newly diagnosed, and to know that they will soon feel better.

So, my answer is: I think that we will all be better off for learning what our bodies will tolerate, and I am happy to know that my body will immediately start wheezing if I eat something which I am not supposed to have. Though it is uncomfortable to experience the symptoms of Celiac, each of our early-warning systems is designed to see us to and through each stage of life, and I truly believe that once we are on the diet, a miraculous transformation begins to take place, which means longer lives for each of us. And, just think, each of those years we have should be more enjoyable and joy-filled, because, hopefully, we will feel so much better spiritually, physically, and emotionally. Always, Welda Lou

Ursa Major Collaborator

Well, it is possible that many of us won't live as long as we would have, had we been diagnosed as a toddler. But at the same time, I am sure we will live longer than we would have, had we continued eating gluten! So, be glad of the better life you have now, and the added years, rather than dwelling on the lost ones.

And you know, many people who look perfectly healthy, have their heart suddenly quit on them in their thirties, for no apparent reason, and at the same time, many others who seemed sickly all their lives live to be 100. It is impossible to know how long you live.

Just live each day as well as you can, and stop worrying about tomorrow, because there really is no point in that. Each of us could be dead tomorrow, for whatever reason, accidents happen, sudden illnesses, lightning could strike us!

I hope you can manage to think of the positives!

Lollie Enthusiast

I want to add my feelings! I was so sick for the past few years. Sick to the point of thinking I was definantly going to die young. I didn't know what to do. I didn't retain any of my food for more then 30 minutes....We all know the drill, but that was before I knew anything about Celiac.

For the first time in my adult life, I feel like I'm going to have a "normal" life expectancy. I lost my Dad to cancer this past September, I can't think of anything I'd rather not have then cancer. I figure I am doing all that I can to protect myself against the chance of stomache cancer. I have hope for the first time......I can actually attribute that to Celiac. I think it's a whole lot better to know what your battleing, then just going around completely sick. That said, I wish I didn't have any disease at all, but like an earlier poster said, your going to die of something, just don't dwell on it.

Lollie

ianm Apprentice

I was so sick that i have no doubt that I would have been dead by 40 and I am 38. Now that I am healthy I live each day as fully as I possibly can. I don't have time to dwell on how many days i have left. There is just too much to do right now that I could not do when i was sick and I am not about to waste time worrying.


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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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