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

[Joelle L.]

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!

[kareng]

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.  

 

 

 

 

[Joelle L.]

Makes sense, ok thanks.

[Joelle L.]

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!

[kareng]

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! 

[Ennis-TX]

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.

[Jose ned]

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.

[RMJ]

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.

[Joelle L.]

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

[Ennis-TX]

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.
Open Original Shared Link

[squirmingitch]

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.

 

[Joelle L.]

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. 

[Joelle L.]

On ‎29‎/‎12‎/‎2017 at 1:22 PM, Ennis_TX said:

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.
Open Original Shared Link

Awesome, thanks again!

[GFinDC]

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.

[Joelle L.]

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!  ;-)