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Just Diagnosed

LizO
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LizO Rookie
LizO
Posted

Good Morning,

I just got diagnosed with Celiac's have not even met with my Dr. he just sent me an email and said he would call on Thursday.  I have no symptoms whatsoever I was tested because I had a colonoscopy in which they did a biopsy because of "villous blunting and intraepithelial lymphocytes", they followed up with a blood test for confirmation.  My question is have others on this blog been diagnosed with Celiac's with no symptoms or reactions to gluten in their diet? Any suggestions as to where to start to get rid of gluten in my diet (it seems to be everywhere) and any helpful resources you can recommend?  Thanks, Liz 

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cyclinglady Grand Master
cyclinglady
Posted

Me.  I had no GI symptoms at the time I was diagnosed.  I was shocked.  I did have anemia, but struggled with that all my life (my celiac-related anemia was always overlooked due to a genetic anemia).  I had just gone in for a routine colonoscopy (cancer screening for the over 50 club) and during my consult, my GI ordered a celiac blood panel and if positive (it was) and endoscopy too.  

It sounds like your GI biopsied the end of your small intestine.  

Read the “Newbie 101” post pinned at the top of  the “Coping” section of the forum which has a few books worth reading or buying, plus valuable tips.  

Welcome!  

pikakegirl Enthusiast
pikakegirl
Posted

Me too. No typical symptoms at all, not even anemia. Had lots of malnutrition symptoms and organ issues like kidney stones. Was obese with no serious GI effects. I Notice i no longer have sinus infections or congestion. My skin and hair are better as well as losing 90 lbs of obese weight. I had no idea how to cook healthy and started by buying gluten free processed food. Have read lots of nutrition books and now love my rice cooker and crockpot. I use my microwave to steam fresh veggies and bake sweet potatoes. Have found going organic gives me peace of mind but probably has nothing to do with gluten-free. It took a good 6 months for my blood work to be normal. If you have any thyroid issues watch your numbers as you heal. I needed less meds as it swung in opposite direction since my immune system backed down. Single ingredient foods. No sauces. I needed to go dairy and corn free as well. I use honey and cut out sugar. Fruit is my candy. I have never eaten this good in my life but i thought i had been healthy. I even reversed the arterial sclerosis i had built in my aorta from high cholesterol while undiagnosed. I think my diagnosis helped my health in many more ways than just going gluten-free.  Wish i had found this place sooner. Its wonderful. gluten-free since 2007.

LizO Rookie
LizO
Posted
  • Author

Thanks for the great comments, I am chronically anemic so I guess that was a sign but it never bothered me, Dr. informed me.  I guess I am lucky I don't have worse symptoms-as I said, I have not even been in to see the Doctor yet will talk on Thursday but have immediately stopped Gluten......never realized that there was gluten in so many things.....Yikes!  It is much healthier to eat this way so I am going to look at this positively as a way to be healthier and maybe lose those stubborn 30 pounds I have been unable to drop....This is just a shock to me as I had to look it up to see what it was.....Thanks for the welcome and the tip to check out the newbie post!  Liz

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  • Recent Activity

    1. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Are Lindt chocolate balls gluten free?

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    2. BlessedinBoston
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      Are Lindt chocolate balls gluten free?

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      My only proof

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      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
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      My only proof

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      Are Lindt chocolate balls gluten free?

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  • Posts

    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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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