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WNY Group promotes awareness of celiac disease - WBFO


Scott Adams

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WBFO

The Western New York Gluten-Free Diet Support Group is trying to change that by raising awareness of celiac disease with an event on September 10 at the Hearthstone Manor in Depew. WBFO's Joyce Kryszak talked with some people about what it's like to ...

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    • knitty kitty
      @PlanetJanet, Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try. Here are articles on these vitamins and pain relief... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ And... Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review https://pubmed.ncbi.nlm.nih.gov/33865694/
    • Scott Adams
      Here is the info from their website. If you don't trust them, you may find products that are labelled "gluten-free," but I don't see any reason to believe there is any gluten in them. Hunt's Tomato Paste: https://www.hunts.com/tomato-sauce-paste/tomato-paste   Hunt's Tomato Sauce: https://www.hunts.com/tomato-sauce-and-paste/tomato-sauce  
    • PlanetJanet
      Hi, trents, Thanks for responding! One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants.  My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy. Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury. I feel so alone.
    • PlanetJanet
      They say maltodextrin is gluten-free, even if it's made from wheat, because the gluten is processed away.  It makes no difference to my body.  I still get uncontrollable flatulence and leakage.  Happens every time, even if I refuse to believe it will happen.  Once I was taking Gas-X chewables to hang around with people I was visiting and staying with, to make sure I would feel safer and more comfortable.  WRONG.  I forgot to read the label. I didn't realize it till after I left and went home--MALTODEXTRIN.  I was miserable the whole time. The second gastroenterologist I saw made the tentative diagnosis of microscopic colitis.  Usually occurs in women over 60, I was 59, had been in a crash, (2020) was taking alot of NSAIDS, muscle relaxants.  Had constant diarrhea, gas, leaking.  Unbearable, and I didn't know it was NSAIDS.  I was scheduled for two-way endoscopy, mouth to butt, but they wanted $2,000 up front.  Finally, had a colonoscopy in 2022, 10 biopsies, didn't find a thing!  MC can go into remission, which I was, of course, desperate to do.  No more NSAIDS, tried to cut down on all the other pain killers, everything, chemicals that I knew triggered me.  So, no, they didn't find anything.  So sad that we have to make ourselves sicker and more injured to get a proper diagnosis! Microscopic colitis is being seen concurrently with gluten problems.  MC can be triggered by NSAIDS, SSRI's, all kinds of things. https://my.clevelandclinic.org/health/diseases/17227-microscopic-colitis Some links for maltodextrin health effects: https://pmc.ncbi.nlm.nih.gov/articles/PMC6409436/#:~:text=Altogether%2C these findings show that,the development of intestinal inflammation. https://www.mdedge.com/internalmedicine/article/193956/gastroenterology/maltodextrin-may-increase-colitis-risk  
    • PlanetJanet
      Titanium dioxide is that chemical in vitamins, toothpaste, and processed white foods that is the whitener for the pill coloring.  It is inflammatory for me.  I have an intestinal reaction to it, every time. https://www.webmd.com/diet/titanium-dioxide-in-food https://pmc.ncbi.nlm.nih.gov/articles/PMC11295244/#:~:text=EFSA concluded that titanium dioxide,uncertainties in recent toxicological studies.
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