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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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    • Colleen H
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      By Colleen H · Posted

      Has anyone had a reaction to gluten free pasta ?  I made ground beef pasta and gluten free sauce and I'm having every symptom there is.  Nausea ,  constipated,   burning pins and needles, anxiety...etc   lots of pain 😞 headache 😭  Does this sound familiar?   I'm literally bed ridden.  
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      Thank you for your reply.  I read the same thing about distilled water.  Oddly, drinking that has not caused any sort of reaction in my gut.  Nothing I can hear and feel anyway.  🤣  With that said, I have also switched over to spring water for drinking.  My traditional go to grocery store charges the exact same thing ($1.39) for a gallon of pre-bottled spring, distilled, or RO water.  The manual gallon refills of RO water have an attractive price of $0.49 per gallon, provided you use your own container.  Knowing it causes major bubble gut (and likely other issues) for me, I am avoiding all RO water moving forward.  In fact, I will gladly drink tap before RO water. Here is what Google says when searching "European study regarding reverse osmosis water". --Begin quote: European studies indicate that while reverse osmosis (RO) is highly effective at removing contaminants, it strips essential minerals (calcium, magnesium) and creates low-mineral, slightly acidic water.  Research suggests this may have long-term health implications, such as mineral deficiencies, while also negatively affecting the sensory quality (taste) of water. Key Findings from European Research & Reviews: Health Concerns: Epidemiological studies in Europe have associated low-mineral water consumption with increased risks of cardiovascular disease, cognitive decline, and reduced intake of essential nutrients. Mineral Depletion: RO systems can remove up to 95%+ of solutes, including minerals that are vital for health. Sensory and Quality Impact: Studies show that reducing the mineral content (TDS) of water makes it taste bitter or flat, with optimal, "fresh" taste found in water with a TDS between 190 and 350 mg/L, suggesting post-RO remineralization is necessary for better quality. Regulatory & Safety Context: While not banned, European regulations under the Drinking Water Directive emphasize the importance of mineral content, and countries like Germany often favor alternative treatment technologies that retain minerals. Industrial Application: In Europe, RO is widely accepted for industrial applications (e.g., food, beverage, pharma) due to its high purity output, but it poses challenges like membrane biofouling. Environmental Impact: RO is recognized to use more energy and waste more water (up to 15% more) compared to conventional treatment methods, raising environmental concerns in some municipalities.  Recommendations: Due to the loss of minerals, many experts recommend remineralizing RO water before drinking to improve taste and nutritional value.  --End Quote
    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

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    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
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