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- DanteZaffar replied to DanteZaffar's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10Young celiac person looking for advice
Thank you! This is very helpful I’ll start looking over everything and writing down what I may be recent to. I suspect minor gluten or another intolerance. Do you have any advice on how to possibly expedite my healing process? I’ve heard taking different herbs and vitamin supplements but it’s a bit overwhelming for how recent I’ve been trying to keep track o... -
- Doris Barnes replied to Doris Barnes's topic in Related Issues & Disorders3Products that help to break down potential accidental gluten exposure
Thank you. I will give it a try. Got good reviews on Amazon. -
- Bev in Milw replied to DanteZaffar's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10Young celiac person looking for advice
Based on the amount of gluten in typical US diet, our bodies have a really high tolerance for gluten. While it makes us sick, from inflammation, poor digestion/limited absorption of basic nutrients, & specific vitamin & mineral deficiencies, it doesn’t kill quickly. By this time celiac is dx-ed, our immune system are usually over worked & ... -
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- Scott Adams posted a topic in Doctors0
How to Find a Celiac-Savvy Doctor – Tips & Resources
Finding a doctor who truly understands celiac disease can be challenging—many still rely on outdated info or dismiss lingering symptoms. Here's what's worked for me and others in the celiac community: 1. Start with a Gastroenterologist (GI) Specializing in Celiac Look for GIs affiliated with celiac research centers (e.g., Columbia University, ...
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By DanteZaffar · Posted
Thank you! This is very helpful I’ll start looking over everything and writing down what I may be recent to. I suspect minor gluten or another intolerance. Do you have any advice on how to possibly expedite my healing process? I’ve heard taking different herbs and vitamin supplements but it’s a bit overwhelming for how recent I’ve been trying to keep track of my diet. Doing my best to feel better since I’m heaving so many annoying symptoms 😕 -
By Doris Barnes · Posted
Thank you. I will give it a try. Got good reviews on Amazon. -
By Bev in Milw · Posted
Based on the amount of gluten in typical US diet, our bodies have a really high tolerance for gluten. While it makes us sick, from inflammation, poor digestion/limited absorption of basic nutrients, & specific vitamin & mineral deficiencies, it doesn’t kill quickly. By this time celiac is dx-ed, our immune system are usually over worked & under fed. Once dx -ed & on GFD, gut starts to heal & immune system function improves both in its ability to find gluten & to response to it. Basically, immune system is on high alert & fully armed so traces of gluten can set off reactions that are as bad or worse than those pre-dx. You’ve reached that point so it’s time to go through products you’re using & look for little things like Vit E from wheat germ in your lip gloss/shampoo. (In our group, one member’s 10 yo got sick after usual Friday shower in mom’s bathroom with HER shampoo before going to grandma’s for weekend. Sister was doing same in girls’ usual bathroom & shampoo. Took months to figure out.). Could also be ‘natural flavoring’ from barley (in some chocolate chips) which isn’t wheat-no allergen label. One of thyroid meds (Abie?) was made on non-dedicated line. For those who got a 30 or 90 day Rx from a contaminated batch, the small trace amounts over time caused major problems, esp brain fog. Read up on where cn where cross contamination can occur….shared cooking surfaces, seasoning blends. Ice cream is made on a frozen line that can’t be washed between flavors —Vanilla is ‘plain base’—always made 1st on clean line, chocolate w/ darkest color/ flavor is last. Cookies & cream/glutn is in between. Keeping food diary can help. Steno notebook/spiral at top works best. Put date at top of page…List what you eat in Left column & draw a line —your clock, before lunch, dinner, & bedtime snack. Symptoms get listed in Right column in the appropriate time frame. If you notice symptoms happen with a certain food, but not every time, you start tracking brands or locations (if eating out) to narrow down suspects. Spiral at top of pages makes it easy to slide pages up to compare reactions & foods on different days . Notebooks with side spiral & taking pictures aren’t as convenient for making needed comparisons. You will need a last 3 weeks of data to start figuring things out. I prefer starting at back of notebook so most recent info is on top. (I also don’t have to write on wrinkled pages.) If taking Rx, keep track of refill dates & make friends with pharmacist or find new one who ‘gets gluten-free’… For OTC meds, brand name manufacturers have advertising budgets & change suppliers frequently to keep costs low. Generics w/ gluten-free labels are safer/cost less. No ad budget, more $$ for long- term suppliers. Many gluten-free ingredients are new to our diets. I’ve met people who reacted to rice, tapioca, xanthan gum, carrageenan, canola oil, to name a few. Most hadn’t noticed problems before dx because items weren’t eaten regularly .Personally, I avoid potato starch found in most gluten-free items. It’s naturally high in nitrates that give me bone pain & blisters Saw a note in nutrient text that said ‘enriched foods’ provides ~60% of B vitamins in typical diet. I like multi’s with thiamine HCl because the acid helps with absorption (Teader Joe has one at decent price.) Since Vit C & B’s are water soluble, probably more effective to take half in am & pm..lower doses/more often. Sounds like you are healing about on schedule. Keep up the good work! Don’t be embarrassed/ afraid to ask a lot of question when eating out. Takes a long time—years actually, to figure out that you won’t starve to dead if you have to skip a meal but ‘Nothing tastes as good as gluten-free feels!’ There are 2 Basic Rules for gluten-free. 1. Read every label, every time! 2. When in doubt, leave it out! ( I also like— “With celiac, anything can happen & usually does.” ) I was dx in Dec1981 when incidence was thought to be 1 in 5,000. 2 kids of my kids-5 & 3, got clinical dx then. By late 90’s, Mayo Clinic put prevalence at 1 in 2,000, Results of study done by European drs in US to validate tTg antibody testing for use in US estimated prevalence to be 1 in 134 with only 3% diagnosed. Awareness campaign followed & within -1O yrs rate of dx jumped to 18% before stalling. Since antibody testing is specific for dx-ing celiac, it’s only done IF dr suspects celiac & orders test. Because of my dx, my daughter was screened/ biopsy dx in 2007, along w/ 2 grands, & 2 more since ‘20. (3 of 3 kids, 4 of 5 grands.) Unfortunately, symptoms of celiac are still unknown so drs don’t test, leaving 80+% of sufferers un-dx. Given the odds, getting a dx is truly a blessing and GFD has never been easier than it is today thanks to allergen and gluten-free labeling laws. Congratulations on you dx! -
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By Scott Adams · Posted
Finding a doctor who truly understands celiac disease can be challenging—many still rely on outdated info or dismiss lingering symptoms. Here's what's worked for me and others in the celiac community: 1. Start with a Gastroenterologist (GI) Specializing in Celiac Look for GIs affiliated with celiac research centers (e.g., Columbia University, Mayo Clinic, University of Chicago Celiac Disease Center). Ask if they follow updated guidelines (e.g., repeat endoscopy/biopsy when needed, monitor for refractory celiac, nutrient deficiencies). 2. Leverage Celiac Organizations Celiac Disease Foundation Beyond Celiac Coeliac UK (UK): Healthcare Professional Network 3. Ask Local Celiac Support Groups Facebook groups or Meetup.com chapters often share doctor recommendations (e.g., "Seattle Celiac Group"). Example: "My GI in Boston orders tTG-IgA + DGP-IgG and checks my villi healing progress yearly." 4. Red Flags to Avoid Doctors who say: "Just avoid gluten, you'll be fine" without follow-up testing. Those who dismiss non-GI symptoms (e.g., neuropathy, DH rash, fatigue). Pro Tip: For complex cases (e.g., refractory celiac), seek a university hospital celiac program.
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