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Word Must Be Getting Out


par18

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par18 Apprentice

In the past 48 hours I have met two total strangers both of whom have gone gluten free without any diagnosis from the medical profession. It was my understanding both did so after doing research on the internet concerning their gastro issues. To me this is very encouraging as more and more people are finding their way to this possible solution on their own.

One person has been on the diet for over a year and the other is just starting. Neither seemed overly concerned about the prospect of having to do this the rest of their life. Both were open about discussing their symptoms (just like most of us) and I did not sense any reservations on their part. I told them how impressed I was with their effort and wished both of them luck. Both encounters were in grocery stores. One worked as a cashier and the other was shopping in the gluten free section. Both were young women in their teens or early twenties. I sensed a lot of maturity when speaking to each of them. The word is getting around.

Tom


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Lisa Mentor

Tom:

In the two years since I was diagnoses and learned what in the world Celiac Disease, I have witnessed tremendous awareness.

You are familiar with my hometown. We had no gluten free products. This week the Food Lion (one of two grocery stores) put in a huge health food section and more gluten free products that I only have heard about from this site. Talk about a kid in a candy store.

It's also good product marketing to the "Boomer" generation.

bluejeangirl Contributor

I've been in the gluten free aisle in the store and I'm always amazed how friendly people are who are looking at the same time. I've been asked several times if I'm gluten free and how long etc., etc. People are so willing to share tips and I've been invited to come to meetings. The other day I was in Barnes and Noble looking at G.F. cook books and another gal comes over right by me and I noticed she pulls a G.F. cookbook down. It didn't take long and we were sharing stories of how long we had to suffer before we got the right diagnosis.

I'm so happy there is the awareness out there now. It's not such a loner disease anymore.

Gail

gfpaperdoll Rookie

I think there are a lot of people out there that have gone gluten-free without a diagnosis. I know a lady from my office building that she & her daughter & a friend are all gluten-free & DF & they have no intention of getting a diagnosis, & they are very strict on the diet & do not cheat. They all had a lof of gastro problems and were constantly at the doctors office. No more, they laugh about not making appointments and spending all that money at the doctors office. they had everyone in their apartment complex researching on the internet for them - in addition to talking to me, & they said that all the people in the complex were amazed with what they learned...

With all the publicity that gluten-free is getting now, I think that there are a lot of people that have looked at their health & the health of their families and figurered it out & just threw out the flour etc. There are a lot of people out there that are now used to getting their info on the internet & they are checking it out.

I would also like to say that I have been amazed at the diagnosed celiac people that I know that do not belong to a support group and do not post to the internet etc. I live in a poor part of Houston & the local grocery has a nice gluten-free section and it is sometimes sold out of the best things, people are buying this stuff. & one of the main whole Foods here in town, sometimes you can go thru there & say yes, someone from out of town has been in here & claned out all the Lundberg Rice Chips, the brownie mixes etc etc. Sometimes I am guilty of buying the last three boxes of something myself, maybe picking up a few things to gift to my friends, etc.

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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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