Gluten free in a hurricaine shelter?

[Oldturdle]

We recently had to evacuate to a pet friendly shelter during Hurricane  Ian.  (Thank God, we returned to a dry, intact home.)  This was an incredibly stressful event,  and by the time we got signed in, our dog signed in  and all of settled into the shelter, we were exhausted, and starving.  Three basic meals a day were provided, but of course.no effort was made to make this basic fare gluten free.  I had thrown a quick, gluten free feed bag together, containing peanut butter, cold corn tortillas, and some Kind bars.  I must say, however, when I saw the nice hot cheese burgers being handed out, and I thought about eating peanut butter on cold tortillas, it was all over.  I ate the cheese burger, (best thing I have consumed since I was diagnosed a year and a half ago!)  I must say, I suffered no Ill effects.  I felt completely normal.  The next day, I had a regular sandwich for lunch, and sausage pizza for dinner.  Again, yum!

     Of course, as soon as I got home, I went strictly gluten-free.   I was diagnosed with Celiac disease with two possitive EGD's, and a very high blood antibody level.  After one year, my antibodies were normal, although the scope still showed some blunting.

     I am happy that I seem to tolerate gluten, and can eat it in an emergency situation.  Is this normal in my stage of recovery, or can I expect to become less tolerant of gluten as I recover?

 

 

 

 

 

 

[knitty kitty]

It's simply that the levels of antibodies against gluten have dropped because you were on a gluten free diet.  Some of the cells that produce the antibodies have died off.  Continued exposure to gluten will cause more antibody producing cells to mature and start producing massive amounts of antibodies again.

It does take the body a little while to launch a systematic reaction as severe as pre-diagnosis, but  any gluten intake is capable of causing more damage.

Don't be fooled.  You are still Celiac. 

  P.S.  Those people who have severe reactions to small gluten exposure still have lots of antibody producing cells in their bodies.

Edited October 1, 2022 by knitty kitty
Add more information

[Oldturdle]

5 hours ago, knitty kitty said:

It's simply that the levels of antibodies against gluten have dropped because you were on a gluten free diet.  Some of the cells that produce the antibodies have died off.  Continued exposure to gluten will cause more antibody producing cells to mature and start producing massive amounts of antibodies again.

It does take the body a little while to launch a systematic reaction as severe as pre-diagnosis, but  any gluten intake is capable of causing more damage.

Don't be fooled.  You are still Celiac. 

  P.S.  Those people who have severe reactions to small gluten exposure still have lots of antibody producing cells in their bodies.

Thanks Knitty Kitty.  That makes a whole lot of sense.  I am strictly back on my gluten free diet, and am very well aware of the consequences of untreated Ciliac disease

  It did taste so good, though!

[Sabaarya]

14 hours ago, Oldturdle said:

We recently had to evacuate to a pet friendly shelter during Hurricane  Ian.  (Thank God, we returned to a dry, intact home.)  This was an incredibly stressful event,  and by the time we got signed in, our dog signed in  and all of settled into the shelter, we were exhausted, and starving.  Three basic meals a day were provided, but of course.no effort was made to make this basic fare gluten free.  I had thrown a quick, gluten free feed bag together, containing peanut butter, cold corn tortillas, and some Kind bars.  I must say, however, when I saw the nice hot cheese burgers being handed out, and I thought about eating peanut butter on cold tortillas, it was all over.  I ate the cheese burger, (best thing I have consumed since I was diagnosed a year and a half ago!)  I must say, I suffered no Ill effects.  I felt completely normal.  The next day, I had a regular sandwich for lunch, and sausage pizza for dinner.  Again, yum!

     Of course, as soon as I got home, I went strictly gluten-free.   I was diagnosed with Celiac disease with two possitive EGD's, and a very high blood antibody level.  After one year, my antibodies were normal, although the scope still showed some blunting.

     I am happy that I seem to tolerate gluten, and can eat it in an emergency situation.  Is this normal in my stage of recovery, or can I expect to become less tolerant of gluten as I recover?

 

Hi. May I ask what was your March score last year (meaning damage to small intestine) and what it Marsch score it has been changed to? I was diagnosed 12 month ago and planning to have repeat score in November. I’m kind of worried. Thank you. Saba:)

 

 

 

 

 

[Oldturdle]

5 hours ago, Sabaarya said:

 

I am sorry.  I don't know what a Marsch score is.  My first biopsy said I had severe duodenitis, and villi blunting "consistent with Celiac Sprue."  My antibody blood test was over 2,000.

  3 months later, the antibodies were about 1,200.  A year later, they were normal.  My biopsy at this time still showed intestinal blunting, but duodenitis was not mentioned.

     Don't worry!  If you are following a gluten free diet, your numbers will come down, and your intestines will heal.  Some improve faster than others, but your progress will do nothing but continue.  After all, they do say this disease is treatable and reversible with a gluten free diet!

[Laoshi]

Oldturtle, that makes perfect sense about the antibodies.  I was thinking it applied to my situation and it does but there’s another factor to consider.  Long story but important to read.

I was never diagnosed per se, but at the time my doctor gave me the original test —I think it’s called tTg—the numbers had to be above 20 to suggest a biopsy and if the were at 100 or higher it was definite and you didn’t need a biopsy.  My number was 99. Since you had to eat gluten to get the biopsy, we decided 99 was close enough.  There was NO WAY I was going to eat gluten to confirm with a biopsy since 99 was already a strong indicator.

Then, I moved to China and was there for 5-6 month stretches for 10 years, only coming back for spring breaks and summer holidays. It was easier to go gluten free as they didn’t have bread or wheat products everywhere.  Soy sauce is derived from wheat, so I had to learn how to ask for no soy sauce, but otherwise I began to heal.  I found that when I visited home I would react, as it wasn’t so easy to avoid accidental glutening here at home in the west.  I reacted to dairy too, which made me break out in DH.

Once I made gingerbread for my students in China, wearing plastic food gloves and being super careful not to breathe in flour etc.  I was completely fine.  I made gingerbread  again a few Christmases later, in 2017, after six years of being gluten free, and accidentally and unthinkingly put a piece of stray dough in my mouth. Oh no!  But, I didn’t react that whole day.  The next day, curious, I ate a Gingerbread cookie and waited.  Nothing happened.  So, this is where the part about antibodies makes sense.  I just kept experimenting.  I had KFC, and egg tarts, and kept rejoicing that I could eat anything again and not react. 

I visited home and ate plain, organic Olympic yogurt — I ate nothing else but that after arriving at my mom’s from the airport and two hours later was in that extreme familiar pain.  
 

I don’t live in China anymore.  But while there, since 2017 I have eaten anything and everything and never had a reaction.  I avoided gluten at home though, because I would react.  It wasn’t just the Olympic yogurt, but I found that in China I never reacted and at home I often did, accidentally, even while avoiding wheat and dairy.  I had heard that many people said they would eat gluten in other countries but never react until they were at home.  So I concluded it’s the wheat here, perhaps contaminated by roundup, that is the problem.  Celiac rates have increased at the exact same timeline as roundup use.  When I came home for good, I went to the T&T Chinese supermarket and bought flour from China.  I used it without a problem.  I bought pasta from Italy.  No problem. I’ve been home for just over a year and six months ago i ate a commercial cookie accidentally but didn’t react.  I thought maybe I was cured.  So, I experimented with an Apple fritter from Tim Hortons.  No reaction.  I had a white spot hamburger. No reaction! I have been now eating gluten indiscriminately for a few months, and a couple weeks ago, bam.  Gluten symptoms back again.  Then I read your post and it makes sense.  Except….the China factor.  I am now gluten free again, but I’m going to do some experiments in a month or so with Chinese flour.  I’m betting it will be ok.  Otherwise, why woukd I be fine for years in China but in just a few months home it returns.  The antibodies idea makes sense except for that.
 

 I do think roundup is a significant aggravating factor that puts one over the edge if you have a genetic susceptibility.  As a young adult and as a child, i never heard anything about celiac disease and now it’s everywhere.  These days, everyone knows about gluten free etc.  and the numbers have mushroomed.  I will see if I can add a picture below of the difference in me after living in China for six years.

[knitty kitty]

Good to hear from you, @Laoshi.

This article explains how different varieties of wheat can have differing inflammation effects.

Bread and Other Edible Agents of Mental Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/#!po=18.0556

[Laoshi]

6 minutes ago, knitty kitty said:

Good to hear from you, @Laoshi.

This article explains how different varieties of wheat can have differing inflammation effects.

Bread and Other Edible Agents of Mental Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/#!po=18.0556

Nice article! Thanks.  

[Sabaarya]

3 hours ago, Oldturdle said:

I am sorry.  I don't know what a Marsch score is.  My first biopsy said I had severe duodenitis, and villi blunting "consistent with Celiac Sprue."  My antibody blood test was over 2,000.

  3 months later, the antibodies were about 1,200.  A year later, they were normal.  My biopsy at this time still showed intestinal blunting, but duodenitis was not mentioned.

     Don't worry!  If you are following a gluten free diet, your numbers will come down, and your intestines will heal.  Some improve faster than others, but your progress will do nothing but continue.  After all, they do say this disease is treatable and reversible with a gluten free diet!

Thank you! My celiac panel was negative, I was diagnosed by biopsy and positive genetic test. Hopefully scope will be better for me as well:)

thank you 🙏☺️

[Oldturdle]

1 hour ago, Laoshi said:

Oldturtle, that makes perfect sense about the antibodies.  I was thinking it applied to my situation and it does but there’s another factor to consider.  Long story but important to read.

I was never diagnosed per se, but at the time my doctor gave me the original test —I think it’s called tTg—the numbers had to be above 20 to suggest a biopsy and if the were at 100 or higher it was definite and you didn’t need a biopsy.  My number was 99. Since you had to eat gluten to get the biopsy, we decided 99 was close enough.  There was NO WAY I was going to eat gluten to confirm with a biopsy since 99 was already a strong indicator.

Then, I moved to China and was there for 5-6 month stretches for 10 years, only coming back for spring breaks and summer holidays. It was easier to go gluten free as they didn’t have bread or wheat products everywhere.  Soy sauce is derived from wheat, so I had to learn how to ask for no soy sauce, but otherwise I began to heal.  I found that when I visited home I would react, as it wasn’t so easy to avoid accidental glutening here at home in the west.  I reacted to dairy too, which made me break out in DH.

Once I made gingerbread for my students in China, wearing plastic food gloves and being super careful not to breathe in flour etc.  I was completely fine.  I made gingerbread  again a few Christmases later, in 2017, after six years of being gluten free, and accidentally and unthinkingly put a piece of stray dough in my mouth. Oh no!  But, I didn’t react that whole day.  The next day, curious, I ate a Gingerbread cookie and waited.  Nothing happened.  So, this is where the part about antibodies makes sense.  I just kept experimenting.  I had KFC, and egg tarts, and kept rejoicing that I could eat anything again and not react. 

I visited home and ate plain, organic Olympic yogurt — I ate nothing else but that after arriving at my mom’s from the airport and two hours later was in that extreme familiar pain.  
 

I don’t live in China anymore.  But while there, since 2017 I have eaten anything and everything and never had a reaction.  I avoided gluten at home though, because I would react.  It wasn’t just the Olympic yogurt, but I found that in China I never reacted and at home I often did, accidentally, even while avoiding wheat and dairy.  I had heard that many people said they would eat gluten in other countries but never react until they were at home.  So I concluded it’s the wheat here, perhaps contaminated by roundup, that is the problem.  Celiac rates have increased at the exact same timeline as roundup use.  When I came home for good, I went to the T&T Chinese supermarket and bought flour from China.  I used it without a problem.  I bought pasta from Italy.  No problem. I’ve been home for just over a year and six months ago i ate a commercial cookie accidentally but didn’t react.  I thought maybe I was cured.  So, I experimented with an Apple fritter from Tim Hortons.  No reaction.  I had a white spot hamburger. No reaction! I have been now eating gluten indiscriminately for a few months, and a couple weeks ago, bam.  Gluten symptoms back again.  Then I read your post and it makes sense.  Except….the China factor.  I am now gluten free again, but I’m going to do some experiments in a month or so with Chinese flour.  I’m betting it will be ok.  Otherwise, why woukd I be fine for years in China but in just a few months home it returns.  The antibodies idea makes sense except for that.
 

 I do think roundup is a significant aggravating factor that puts one over the edge if you have a genetic susceptibility.  As a young adult and as a child, i never heard anything about celiac disease and now it’s everywhere.  These days, everyone knows about gluten free etc.  and the numbers have mushroomed.  I will see if I can add a picture below of the difference in me after living in China for six years.

What a story! Everyone is so different!  You show some pretty strong personal evidence that it is Western gluten doing the damage!  Have you had your antibodies done recently?

     I must say, I spoke too soon about my gluten eating experience.  After being home, and gluten free for a day, I started to have intense intestinal cramping, oh so much gas, and, what I call cow pie stools.  This lasted almost 3 days.  Oh well, live and learn.  I should have eaten my dog's gluten free dog food!

[Laoshi]

Oldturtle, yes, I have to say, the evidence iS strong.  Not once in all my time in China did I experience a gluten reaction.  There were no ‘accidents’ —except when eating products from the west.  For example, my students and fellow teachers and friends lived to receive chocolate bars as gifts from home so I would bring a box, and if I succumbed to the temptation and ate one myself, bam! I was hit by the all too familiar pains.  
 

Another  interesting thing is, it was only organic Olympic yogurt that I reacted to, and other yogurts were fine with some exceptions.  So organic just means the cows weren’t injected with antibiotics—it doesn’t mean that the cows aren’t eating roundup sprayed hay.

So I did eat gluten here, for the past few months, thinking I was somehow cured by the scads of vitamin d I take that helped my immune system, but it is so insidiously gradual that you don’t notice it creeping up on you.  I’m back off gluten scrupulously and I might get my antibodies checked but it’s difficult at the moment.

[cherellemallariajc27]

Such quality answers will help a lot. There would be more of these.

[JenniK]

On 10/1/2022 at 12:13 PM, Oldturdle said:

We recently had to evacuate to a pet friendly shelter during Hurricane  Ian.  (Thank God, we returned to a dry, intact home.)  This was an incredibly stressful event,  and by the time we got signed in, our dog signed in  and all of settled into the shelter, we were exhausted, and starving.  Three basic meals a day were provided, but of course.no effort was made to make this basic fare gluten free.  I had thrown a quick, gluten free feed bag together, containing peanut butter, cold corn tortillas, and some Kind bars.  I must say, however, when I saw the nice hot cheese burgers being handed out, and I thought about eating peanut butter on cold tortillas, it was all over.  I ate the cheese burger, (best thing I have consumed since I was diagnosed a year and a half ago!)  I must say, I suffered no Ill effects.  I felt completely normal.  The next day, I had a regular sandwich for lunch, and sausage pizza for dinner.  Again, yum!

     Of course, as soon as I got home, I went strictly gluten-free.   I was diagnosed with Celiac disease with two possitive EGD's, and a very high blood antibody level.  After one year, my antibodies were normal, although the scope still showed some blunting.

     I am happy that I seem to tolerate gluten, and can eat it in an emergency situation.  Is this normal in my stage of recovery, or can I expect to become less tolerant of gluten as I recover?

 

 

 

 

 

 

Me too! I am so happy for you that you could adapt to that very stressful situation and not react horribly while you were in the shelter. We can make all the best efforts, but Life can still throw us a curveball, and I am so glad that you were able to weather it without feeling sicker. 
best wishes for the hurricane recovery. Jen

[JenniK]

On 10/2/2022 at 12:34 PM, Laoshi said:

Oldturtle, yes, I have to say, the evidence iS strong.  Not once in all my time in China did I experience a gluten reaction.  There were no ‘accidents’ —except when eating products from the west.  For example, my students and fellow teachers and friends lived to receive chocolate bars as gifts from home so I would bring a box, and if I succumbed to the temptation and ate one myself, bam! I was hit by the all too familiar pains.  
 

Another  interesting thing is, it was only organic Olympic yogurt that I reacted to, and other yogurts were fine with some exceptions.  So organic just means the cows weren’t injected with antibiotics—it doesn’t mean that the cows aren’t eating roundup sprayed hay.

So I did eat gluten here, for the past few months, thinking I was somehow cured by the scads of vitamin d I take that helped my immune system, but it is so insidiously gradual that you don’t notice it creeping up on you.  I’m back off gluten scrupulously and I might get my antibodies checked but it’s difficult at the moment.

Interestingly, I also lived in China for 7 years.  This was before knew i was celiac, so was not gluten-free at all. I was sick ALL the time with D and DH. No one ever suggested trying gluten-free to me- only IBS and anxiety.

well, back here after years of gluten-free, I don’t have D, don’t have DH and don’t have anxiety. I enjoyed my time there, made great friends and still miss it sometimes. But My thoughts on the subject differ from yours. I think the likelihood of drinking chemically contaminated water and foods with unsafe products pushed my gut over the line to switch on the celiac and become very intolerant.  No, it was not the common dangerous bacteria infections. I tested negative for those. Of course, I was there during the baby formula melamine scandal, and bottled water company scandal (delivery companies filling old bottles with a hose) and water and air pollution were suddenly getting  so extreme that many previously happy foreigners were leaving. So, who knows? I do agree about the Italian flour though. When I was only gluten-free, but didn’t think I was celiac, I did not react to it for occasional use. I have not tried it since Dr called me Celiac though. 

[knitty kitty]

5 hours ago, JenniK said:

@JenniK said...

I think the likelihood of drinking chemically contaminated water and foods with unsafe products pushed my gut over the line to switch on the celiac and become very intolerant.  No, it was not the common dangerous bacteria infections. I tested negative for those. Of course, I was there during thebaby formula melamine scandal, and bottled water company scandal (delivery companies filling old bottles with a hose) and water and air pollution were suddenly getting  so extreme that many previously happy foreigners were leaving. So, who knows? I do agree about the Italian flour though. When I was only gluten-free, but didn’t think I was celiac, I did not react to it for occasional use. I have not tried it since Dr called me Celiac though. 

@JenniK, you are on the right track....

Environmental factors such as chemically contaminated water, water and air pollution, can influence our health.

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https://pubmed.ncbi.nlm.nih.gov/27958327/

 

[ButWhatCanIEat]

It's different for everyone, but I cannot tolerate going off my gluten-free diet. There seems to be little to no awareness of gluten-free needs in emergency situations - sadly, most people still think of it as a fad or something people can ignore for a while. I avoid evacuating and going to shelters in part because I wouldn't be able to eat anything.

[Oldturdle]

On 11/26/2022 at 12:31 AM, ButWhatCanIEat said:

It's different for everyone, but I cannot tolerate going off my gluten-free diet. There seems to be little to no awareness of gluten-free needs in emergency situations - sadly, most people still think of it as a fad or something people can ignore for a while. I avoid evacuating and going to shelters in part because I wouldn't be able to eat anything.

ButWhatCanIeat, (love the name!)  I understand how truly ill some people get after just a crumb or two of gluten, and when I ate gluten at the shelter for the first time in a year and a half, I certainly didn't know how I would react.  Fortunately, I just had a couple of days of loose stools after I got home.

     To credit the Red Cross,  who ran the shelter, they did tell us all ahead of time that they would not be able to provide food for people on special diets, and we would need to bring our own.  I did see one woman packing in a heavy bag of what she said was her special diet, but I never did get to ask her what special diet she was on.  As I said. I did throw a big bag of corn tortillas, a jar of peanut butter and a few kind bars into my bag.  Had I decided to stick to my gluten free diet, I would not have starved.  I just would have felt deprived.  Big difference!

     I am just very grateful that shelters exist.  I do take Gliadinx for cross contamination when I go out to eat, without ever having had a problem.  At the shelter, one could do this and just eat the naturally gluten free foods. ( Chef salads, chips, milk, and various fruits were available.)