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- Bev in Milw replied to DanteZaffar's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease9Young 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Finding a doctor who truly understands celiac disease can be challenging—many still rely on outdated info or dismiss lingering symptoms.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, ... -
- Joel K replied to Joel K's topic in Traveling with Celiac Disease2gluten-free British Virgin Islands Travel
A year later, I can say (1) I've sailed around in the BVIs now twice since my original posting on this subject and found several restaurants that were safe for me. I was happy to see most of the larger restaurants had at least someone who could answer questions if no mention was made in the menus. And (2) I was sad to see that none of the bars or restaurants... -
- Beverage replied to Scott Adams's topic in Related Issues & Disorders1To kiss or not to kiss: Can gluten pass through a smooch?
My college aged step grand daughter, diagnosed with Celiacs 2 years ago, did get a reaction after kissing her new boyfriend. It was driving her nuts trying to figure it out until I asked her if she'd been kissing anybody. She went beet red. They did some testing of the situation, and thought that was the source. For her, having him drink something and...- 1
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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. -
A year later, I can say (1) I've sailed around in the BVIs now twice since my original posting on this subject and found several restaurants that were safe for me. I was happy to see most of the larger restaurants had at least someone who could answer questions if no mention was made in the menus. And (2) I was sad to see that none of the bars or restaurants in Cane Garden Bay, Tortola, were safe for folks with celiac disease, especially since I used to live there quite a while back but had not yet been diagnosed. For the record, Road Town in Tortola had two places I could eat relatively safely in public: The Village Inn Marina restaurant, because the kitchen is outside and I could speak directly with the chef (servers aren't much help in knowing, but are helpful if you ask them to ask the chef), and Capriccio di Mare, which is a short hike from Village Cay. Again, servers, not so much. But the owner/manager is very visible and accessible and she's got celiac down to a tee. She even makes sure there are gluten-free desserts available! As for the other British Virgins: Virgin Gorda: There's a place in Leverick Bay and another at Saba Rock resorts where we can eat safely. I didn't make it down to Spanishtown on either trip due to weather. Above The Baths was another place supposed to be another place, but I have that on hearsay from one of my non-celiac disease shipmates. Marina Cay: Lots of gluten-free options and I felt quite safe eating there. Jost Van Dyke: Foxy's had someone who knew what I could have safely, and they included most everything on the menu. Some weren't, but the lady could tell me which. Norman Island: The Pirate's Bight restaurant is about as safe as it gets down there. Servers are clued in, food was marked on the menu and plates when they came out. Leave it to BVI to have the safest gluten-free restaurant on an unhabited island! No problem, mon. Anegada: We ate at the Lobster Trap and at Potter's. Good stuff, Maynard! I have to say, most of the restaurants make real food rather than processed, out-of-the-packet/box food down there. So as long as you stick to whole foods, you're more than likely fine. I did use my GliadinX product the first time I went down there last November in all the places I ate ashore. But not the second time in April. Especially in the places where the locals remembered me. I actually felt safer in most places down in the BVIs than most restaurants in my own hometown in New Hampshire.
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My college aged step grand daughter, diagnosed with Celiacs 2 years ago, did get a reaction after kissing her new boyfriend. It was driving her nuts trying to figure it out until I asked her if she'd been kissing anybody. She went beet red. They did some testing of the situation, and thought that was the source. For her, having him drink something and rinse out his mouth didn't do enough. He started carrying a little toothbrush and toothpaste around with him. I noticed he started kissing the back of her hand instead of her face from time to time, so dang cute. She hasn't had the problem since, and still with that nice young man that was so considerate and willing to do a little change for her.
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