5 5
Joelle L.

If one Celiac has a reaction, shouldn't we all avoid that item?

Rate this topic

Recommended Posts

Hi, this is my first post so I hope it comes through alright.  I'm only 5 months diagnosed Celiac and I'm still confused about something.  If one person eats something and has an adverse reaction to it (because it has gluten) then should all Celiacs not avoid this item?  Just because one person doesn't happen to have symptoms when they eat or drink that item and since we know it has gluten because it did indeed affect someone else, is it not still affecting your villi and your small intestine - even if you didn't have a bad reaction to it?  I have a lot to learn and hope someone can help shed some light on this one.  Thank you!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


40 minutes ago, Joelle L. said:

Hi, this is my first post so I hope it comes through alright.  I'm only 5 months diagnosed Celiac and I'm still confused about something.  If one person eats something and has an adverse reaction to it (because it has gluten) then should all Celiacs not avoid this item?  Just because one person doesn't happen to have symptoms when they eat or drink that item and since we know it has gluten because it did indeed affect someone else, is it not still affecting your villi and your small intestine - even if you didn't have a bad reaction to it?  I have a lot to learn and hope someone can help shed some light on this one.  Thank you!

There are a lot of reasons for this - 

The main reason is that that would leave absolutely nothing to eat or drink!  Nothing! Not even water!  I have seen people swear they have a gluten reaction to water, bananas, oranges, etc.  

How do you know that this person you do not know is even telling the truth? 

How do you know it is a reaction to gluten not some other ingredient they can't have.  For example - lactose intolerance can produce symptoms like bloating, gas and diarrhea which are often Celiac symptoms.  Maybe  there was no gluten in the bread made by a big gluten-free company but the cheese on the sandwich is the problem?  

I saw someone swear there was gluten in Jello.  She hadn't had it in years and she ate some and got a "gluten" reaction of diarrhea, etc.  Finally got her to admit that the reason she made Jello was because her kids had a nasty stomach virus.  But she wouldn't admit that she had caught it from the kids.

Maybe it wasn't gluten in the gluten-free hamburger bun they got at the restaurant, more likely it was cc from all the other gluten items.

 

I can give you a lot more, if I need to.  B)

 

 

 

 

Edited by kareng
  • Like 1

Share this post


Link to post
Share on other sites

Actually I would like to elaborate more, if that's ok.  Makes sense that just because "one" person says they had issues doesn't mean that we would all then avoid that item.  Got that.  What about something larger, something like whiskey and vodka?  There are tons of folks out there that say they have had reactions yet there are tons (and some that have written books and articles about it) that swear that the distillation process removes it.  How do you yourself decide, how many people does it take to convince you that you maybe shouldn't have it anymore?  Sorry if you think this is a stupid question.  Thanks!

Share this post


Link to post
Share on other sites
1 minute ago, Joelle L. said:

Actually I would like to elaborate more, if that's ok.  Makes sense that just because "one" person says they had issues doesn't mean that we would all then avoid that item.  Got that.  What about something larger, something like whiskey and vodka?  There are tons of folks out there that say they have had reactions yet there are tons (and some that have written books and articles about it) that swear that the distillation process removes it.  How do you yourself decide, how many people does it take to convince you that you maybe shouldn't have it anymore?  Sorry if you think this is a stupid question.  Thanks!

I go with science.  

 

And if something bothers you - like whiskey or potatoes or bananas - don't eat it.  But that doesn't mean it has gluten! 

  • Like 2

Share this post


Link to post
Share on other sites
Ads by Google:


1 hour ago, Joelle L. said:

Actually I would like to elaborate more, if that's ok.  Makes sense that just because "one" person says they had issues doesn't mean that we would all then avoid that item.  Got that.  What about something larger, something like whiskey and vodka?  There are tons of folks out there that say they have had reactions yet there are tons (and some that have written books and articles about it) that swear that the distillation process removes it.  How do you yourself decide, how many people does it take to convince you that you maybe shouldn't have it anymore?  Sorry if you think this is a stupid question.  Thanks!

I agree with kareng it is a mix of science and how that food treats you. A great example with the gluten liquor is gluten removed beer is very hard to test. but third party tested and newer papers show that gluten is still minutely present in the finished product. Some celiacs do not notice it others do regardless it will cause damage.

Other things to consider are that many celiacs will develop additional food intolerance issues. Keep a food diary....I have had rolling intolerance issues, where some days I just can not eat a certain food for a week without it triggering me to vomit. Other days that same food will not bother me, no logical reasons as to why. I just listen to my body, if something in its raw, pure, un contaminated form makes me sick...I remove it for a few weeks to a few months. I have had this happen with lettuce before -_- . Common ones are garlic, onions, tomatoes, potatoes. Most common ones with celiacs are lactose, casein, soy, xantham gum, whey, and a few others. Heck I can not tolerate sugars or carbs or my UC flares but but that is another autoimmune disease many do not have to worry about.

  • Like 1

Share this post


Link to post
Share on other sites

In Europe law says wheat starch can be glutenfree if it is extra treated And contains less then 20ppm.

It is used in some glutenfree products, some sorts of glutenfree bread contain glutenfree wheat strach.

A lot of people with celiac don't realize they eat glutenfree wheat strach.

I have celiac and get sick if I eat something with glutenfree wheat strach even if it is a small amount.

I was diagnosed at age 2 and ate glutenfree wheat strach bread until i was 7, i was always still a bit ill and tiered i was not growing as i should have and had other sort of problems. When my mum changed bread recipe all changed, i got better. I'm still far out the shortest person in my family all because of the wheat strach bread.

I think all people with celiac should avoid glutenfree wheat strach. Because to me it does not make sense to risk your health by eating it. It is proven that there is still gluten in the glutenfree wheat strach. And if you don't react to it immediately it does not mean that it does no harm.

  • Like 2

Share this post


Link to post
Share on other sites

A number of studies have looked at the amount of gluten that causes symptoms and/or changes to  antibody levels or villi in patients with celiac disease.  FDA reviewed these studies prior to setting the allowable level of gluten in gluten free foods at 20 ppm.  They saw a LOT of variability between individuals.  20 ppm is safe for many, but not all, people with celiac.  Some are harmed by much lower levels.  So what adversely affects one person may not be harmful for someone else.  I have silent celiac but my antibody levels show that I am “super sensitive.”  I pay attention to the reactions of others who report themselves to be super sensitive, but I also go by science (distillation removes gluten, gluten is not absorbed through the skin) since I am a scientist.

  • Like 2
  • Upvote 2

Share this post


Link to post
Share on other sites
18 hours ago, Ennis_TX said:

I agree with kareng it is a mix of science and how that food treats you. A great example with the gluten liquor is gluten removed beer is very hard to test. but third party tested and newer papers show that gluten is still minutely present in the finished product. Some celiacs do not notice it others do regardless it will cause damage.

Other things to consider are that many celiacs will develop additional food intolerance issues. Keep a food diary....I have had rolling intolerance issues, where some days I just can not eat a certain food for a week without it triggering me to vomit. Other days that same food will not bother me, no logical reasons as to why. I just listen to my body, if something in its raw, pure, un contaminated form makes me sick...I remove it for a few weeks to a few months. I have had this happen with lettuce before -_- . Common ones are garlic, onions, tomatoes, potatoes. Most common ones with celiacs are lactose, casein, soy, xantham gum, whey, and a few others. Heck I can not tolerate sugars or carbs or my UC flares but but that is another autoimmune disease many do not have to worry about.

Ennis_TX - thank you!  I sincerely appreciate your answer.  I felt like an idiot asking the question but your reply makes so much sense and didn't make me feel stupid for asking.  I didn't know that my body might start reacting to certain foods and possibly become intolerant of them.  I was only told it could happen with lactose but not with other foods.  I had a half a glass of wine that I used to drink all the time, last week, and was really sick for 2 days ... I thought I had been glutened but maybe it was just something in that wine that my body doesn't tolerate anymore.  I imagine I'll have to learn the difference between being glutened and eating something my body just doesn't tolerate anymore.  Thanks for the suggestion to start a journal, I will do that for sure.  Thanks again!  Take care, Jo

Share this post


Link to post
Share on other sites
1 hour ago, Joelle L. said:

Ennis_TX - thank you!  I sincerely appreciate your answer.  I felt like an idiot asking the question but your reply makes so much sense and didn't make me feel stupid for asking.  I didn't know that my body might start reacting to certain foods and possibly become intolerant of them.  I was only told it could happen with lactose but not with other foods.  I had a half a glass of wine that I used to drink all the time, last week, and was really sick for 2 days ... I thought I had been glutened but maybe it was just something in that wine that my body doesn't tolerate anymore.  I imagine I'll have to learn the difference between being glutened and eating something my body just doesn't tolerate anymore.  Thanks for the suggestion to start a journal, I will do that for sure.  Thanks again!  Take care, Jo

If wine was your trigger it could also be a histamine intolerance or a leaky gut issue Here is a good read on various other aspects of gut issues like intolerance and sensitivities.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

Share this post


Link to post
Share on other sites


Ads by Google:


Joelle, NO question is ever a stupid question!!!!

This video is an hour & 5 minutes but at least you can stop it & come back to it if you get interrupted. This is Dr. Fasano who is one of the premiere celiac researchers.

 

Share this post


Link to post
Share on other sites
23 hours ago, squirmingitch said:

Joelle, NO question is ever a stupid question!!!!

This video is an hour & 5 minutes but at least you can stop it & come back to it if you get interrupted. This is Dr. Fasano who is one of the premiere celiac researchers.

 

Thank you very much, I'll definitely watch. 

Share this post


Link to post
Share on other sites

Hi Joelle,

It's sometimes difficult to be sure what foods are causing us reactions when we first start the gluten-free diet.  Our digestive system is out of whack (not a scientific term) and needs time to heal and establish a healthy gut flora.  Six months to a 18 months is a possible healing time frame but it can take longer depending on lots of variables.  So you may have reactions now that won't happen later on when your body is healed more.

Then there are food intolerances that may last your life too.  Eating a simple diet of mostly whole foods you cook yourself is helpful for healing.

Edited by GFinDC
can't type right on New Year's Eve... :(

Share this post


Link to post
Share on other sites
4 hours ago, GFinDC said:

Hi Joelle,

It's sometimes difficult to be sure what foods are causing us reactions when we first start the gluten-free gluten-free diet.  our digestive system is out of whack (not a scientific term) and needs time to heal and establish a healthy gut flora.  Six months to a 18 months is a possible healing time frame but it can take longer depending on lots of variables.  So you may have reactions now that won't happen later on when your body is healed more.

Then there are food intolerances that may last your life too.  Eating a simple diet of mostly whole foods you cook yourself is helpful for healing.

Thank you!  ;-)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
5 5

  • Who's Online   16 Members, 0 Anonymous, 471 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

  • Forum Statistics

    • Total Topics
      110,271
    • Total Posts
      949,831
  • Member Statistics

    • Total Members
      77,776
    • Most Online
      3,093

    Newest Member
    Acsata
    Joined
  • Popular Now

  • Topics

  • Posts

    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
    • Yeah their shreds raw are nasty but melted in recipes they are decent, they make 2 different shreds a cutting board super stretchy version and a plain, they also sell that mac and cheese sauce by itself for use in other recipes. https://store.veganessentials.com/daiya-deluxe-cheeze-sauces-p5079.aspx The company makes a decent cream cheese and cheese cake also if you can stomach the xantham gum.

      I am going to copy and paste something from another thread thread and link you a list of alternatives. " Violife...makes vegan Feta...I have been dying to try their cheeses and hear good reviews. They also make other cheeses.
      https://store.veganessentials.com/just-like-feta-by-violife-p5342.aspx
      Kite Hill makes great Ricotta, the truffle cheese from them....yeah you will eat the whole thing in one sitting stuff is addictive,  decent cream cheese if you can stomach xantham gum (only one they have that has it).
      
      Miyoko Creamery makes great mozzarella and even a smoked version I hear they make great cream cheese and wheels also but I have not gotten any. Leaf Cuisines makes the best smoked gouda, and a strong garlic and herb cheese

      Tree line Scallion is glorious, and their garlic and herb is milder then Leaf cuisines but decent flavor...the peppered is meh.

      Daiya Blocks flavor wise are better then the shreds, the jalapeno Havarti is one my my dads favorites and he loves their cheddar...again xantham gum so not for me. Their cream cheese is decent but noticeable artificial. Their shreds come in 2 formulations a high melt version (cutting block) and standard I they taste better cooked into recieps over raw.
      Daiya recently started offering cheese sauces...like the stuff they used to sell with their mac&cheese but just the sauce.

      Lissanatti makes the best "raw" shreds for cheddar and mozz.

      Parma makes great Parmesan sub...the better then bacon one is SUPER addicting.

      I heard good reviews on so delicious cheese....but corn makes makes me not even able to do a chew and spit taste without an allergic reaction.

      I recently found a creamery you can contact about getting cheeses...I found their sauce on a site and got it.....great Alfredo sauce.
      http://www.parmelacreamery.com/
      https://www.luckyvitamin.com/m-28232-parmela-creamery
        Dairy Free cheese products  NOTE CHECK FOR GLUTEN FREE ON THEM
      https://store.veganessentials.com/cheese-alternatives-c6.aspx

      Other gluten free options for everything else  
    • Dairy is dairy on a elimination diet, your trying to void all the proteins, lactose, whey, casein, and the enzymes, hormones, pus, etc that could be setting off issues. I would even say wait at first on the dairy free alts. IF anything go with the fewest ingredients ones without starches or gums like the plain kite hills, tree line, leaf cuisines and miyoko. And completely sideline the crazy ones like daiya, or the blends of more then 2-4 ingredients.
  • Blog Entries

  • Upcoming Events