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- growlinhard1 replied to growlinhard1's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10Colonoscopy with large area of inflammation
I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluyen free earing may cause false negative biopsy results, I went back to gluten full force and feel like you know what... -
- Wheatwacked replied to Nicbent35's topic in Related Issues & Disorders123 year old gluten intolerance?
My mom said when he was born "you got what you gave". Until 5 years of he was gluten free, was well liked by his friends, although did get them into mischief at times, a leader of his group of friends, physically active and paid attention, as much as any preschooler. At 5 years old we moved to my hometown and had to rely on our friends, my pediatrition... -
- Beverage commented on Scott Adams's article in Gluten-Free Foods & Beverages1Safe Gluten-Free Spices and Brands: A Celiac Disease Guide
Morton & Bassett spices are labeled gluten free. I've been using them for years, no problems. I order direct from them as the selection at my grocery is very limited. They have a newsletter with regular discounts and specials: https://mortonbassett.com/home.html Spicely another good gluten free brand, CERTIFIED gluten-free, but not widely available...- celiac disease
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- Beverage replied to Dawn Meyers's topic in Related Issues & Disorders18
Vaccines
I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting... -
- trents replied to CeliacMom502's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease23Facial pain
That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
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By growlinhard1 · Posted
I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluyen free earing may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice. -
By Wheatwacked · Posted
My mom said when he was born "you got what you gave". Until 5 years of he was gluten free, was well liked by his friends, although did get them into mischief at times, a leader of his group of friends, physically active and paid attention, as much as any preschooler. At 5 years old we moved to my hometown and had to rely on our friends, my pediatrition (still the best doctor I ever had), my wife was a nurse so her aquaintences and doctor friends. They all still believed back in 1980's that Celiac was a growing phase, and he wanted to be like everyone else. So everyone's opinion was that if he tolerates gluten with no symptoms he had outgrown it. He passed the summer at the beach (lots of vitamin D) was a prodegy swimmer and the whole team liked him and he fit in well. Fall came, he started kindergarden school, less sun ( low vitamin D, Seasonal Affective Disorder is real), new people and a morning schedule that did not end up in a fun, active day at the beach. Getting him going got more difficult. By the first teacher-parent meeting in December, they brought up the subject. He was disruptive in class. By then we had forgotten what his doctor said 5 years earlier. So he was diagnosed as ADHD. Competitive swimming was his saving grace. All though High School he continued to swim with his competetive team most days after or before school and with the beach club team in addition in the summer. Some records he set lasted years. After high school he became a professional ocean guard. Now getting close to retirement. But always had difficulty concentrating on schoolwork. He, and his wife, incidentally, is now having the health problems that I just have just gotten rid of. I had forgotten what the doctor said to us 60 years earlier, bout Celiac Disease being hereditory. He is starting to listen, but still in denial. Loves his pizza. At 63 I had arthritis, fibromyalgia, sleep apnea, enlarged prostate, alcoholism and I got dumber as the years passed. They all are gone with gluten free and vitamin replenishment. My wife had allergies, endometriosis, fertility problems and miscarriages. She passed 18 years ago. Sorry for the long story. Reminds me of a Joni Mitchell song. "L've looked at life from both sides now. From win and lose, but still somehow, it's life's illusions I recall. I really don't know life, at all" -
I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics. So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc. People with high D during covid had much better outcomes. I always tested low in D even with high oral supplementation of D3 and K2. So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick. I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours. So I do the D Lamp right after my shower, not before. There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp: https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn: https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle. Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site. If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year. Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp.
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That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
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By Mnofsinger · Posted
Hi @CeliacMom502, As always, consult a medical professional on any advice you receive. I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously. Hope my situation helps even now this is now almost three years later from your message!
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