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PatSch

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PatSch Newbie

Hi, everyone! I am new to this site but was diagnosed in 1987 with gluten intolerance and then later with Celiac. I have a large family all of whom are either gluten intolerant or Celiac. Some follow the restrictions, some do not. As for me, I watch my foods and products like a hawk because the symptoms are so awful if disregarded.

I am glad to see that Las Vegas has a forum however, it does not look like it is very active.

As a family we are involved in health care in this community and work with a lot of gluten intolerant folks. Amazing how their lives feel "reborn" with just the elimination of gluten! I love sharing with others that there is another way to feel better and they are the ones responsible for how they feel by what they ingest! No one has to rely on someone else to make them feel better. We are all "in charge" of ourselves. Nice to know the responsibility lies within us.


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sharilee Rookie

Welcome! I was diagnosed myself a month ago and since being gluten free I am feeling better and it is wonderful.

orange Newbie

Hi, everyone! I am new to this site but was diagnosed in 1987 with gluten intolerance and then later with Celiac. I have a large family all of whom are either gluten intolerant or Celiac. Some follow the restrictions, some do not. As for me, I watch my foods and products like a hawk because the symptoms are so awful if disregarded.

I am glad to see that Las Vegas has a forum however, it does not look like it is very active.

As a family we are involved in health care in this community and work with a lot of gluten intolerant folks. Amazing how their lives feel "reborn" with just the elimination of gluten! I love sharing with others that there is another way to feel better and they are the ones responsible for how they feel by what they ingest! No one has to rely on someone else to make them feel better. We are all "in charge" of ourselves. Nice to know the responsibility lies within us.

yr lines gave me hope , well i live in a country in civil war and it is not easy hard to explain but big thk u

orange Newbie

Welcome! I was diagnosed myself a month ago and since being gluten free I am feeling better and it is wonderful.

its good how u feel but remember it is not smooth graph going up there will be up and downs it is a dancing sort of progress one day u move forward next day it may be different story that is where u keep faith for better . it is better to acess (pl forgive my spelling as my english is poor )yourself after every 6 month than we find the difference .

take care n God Bless u

TIBZY Newbie

Hey everyone.. I'm also new here..I was diagnosed with celiac disease at the age 10.. Back then it was very hard as I didn't no much.. 14 years now.. And I am fine :)

ravenwoodglass Mentor

Welcome to you all. There can be ups and downs and it can be frustrating at times but the folks on this board are here to help you in any way they can. Ask any questions you need to and do feel free to vent if needed. We have members from all over the world so if you live in a country or area where eating gluten free can seem a bit daunting just ask what you need to ask and hopefully someone will be able to help.

I hope you all continue to improve.

DawnMarie127 Newbie

Hello ,

I am new here too.. need a place to chat where everyone understands what I am going through.. They all seem to think this is just no big deal.. Don't eat bread your good.. But I was on weight watchers and losing weight then this now I have to change everything again.. Grrrr!!

Now I think I am having Gluten withdrawl, bad headache and I keep snapping at people..

I love to cook for my family and went to taste the pasta out of habit and just started crying.. No one gets it!

That's it for now.. Thanks for listening..


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deltron80 Rookie

Welcome to the forums everyone!

yr lines gave me hope , well i live in a country in civil war and it is not easy hard to explain but big thk u

I always wonder what it's like for people living in food-limited places. When there is nothing to eat besides something with gluten, is it better to eat the poison or to starve??? :(

Hello ,

I am new here too.. need a place to chat where everyone understands what I am going through.. They all seem to think this is just no big deal.. Don't eat bread your good.. But I was on weight watchers and losing weight then this now I have to change everything again.. Grrrr!!

Now I think I am having Gluten withdrawl, bad headache and I keep snapping at people..

I love to cook for my family and went to taste the pasta out of habit and just started crying.. No one gets it!

That's it for now.. Thanks for listening..

It must be extremely difficult for you to adjust while also trying to cook for your family. Maybe try cooking some gluten-free dishes without even telling them it's gluten-free? Then everyone can enjoy the meal together.

ncallier Newbie

Hi! I too am both newly diagnosed and new to this forum. I am very glad to read your reactions to eliminating gluten from your diet. I have been gluten free for less than a month. At first, I thought my gi symptoms were gone for good, but I have days when they flare up again. I am being extremely careful, but it almost feels as though I am getting accidentally glutened. Anyone have any thoughts??

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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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