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Bad Timing


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42 replies to this topic

#16 desperateforhealth

 
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Posted 10 April 2012 - 05:12 PM

Thank you, IrishHeart! My stomach is feeling so much better today, even if my head cold is not. I had some delicious stir fry for dinner and all seems to be well. I think moderating my eating is key, and that's something I should have realized a looong time ago. Good luck with your own wellbeing! Buttercream frosting sounds like it was worth it though. ;)

yolo - That is so very helpful, thank you! I hope I won't have to go completely sugar-free, because I still use small amounts in my baked goods and I am suspicious of artificial sweeteners. I will just have to greatly moderate for now. I use my mom's oven, in which she bakes glutenous things very often, and I've never noticed any reaction to it. But I will keep my eye out for all of those things. I really appreciate the good advice. For my goodies lately I have been using a mixture of millet and rice flower, often with some cornstarch (I don't want to give that up!!). Using beans and potatoes sounds like a good idea though.
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#17 Marilyn R

 
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Posted 10 April 2012 - 05:39 PM

Sorry, just had to mention that this comment "I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend" is not substantiated. (No medical or scientific articles to back that up.)

It's been questioned before. No offense to the OP, she's given me good advice before, but I personally do not agree with the oven advice. I'm very sure it it irrevelant. :angry:
  • 3
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#18 Pac

 
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Posted 10 April 2012 - 07:21 PM

Sorry, just had to mention that this comment "I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend" is not substantiated. (No medical or scientific articles to back that up.)

It's been questioned before. No offense to the OP, she's given me good advice before, but I personally do not agree with the oven advice. I'm very sure it it irrevelant. :angry:


I react to food from shared oven too. It was the only intolerance I discovered while keeping a food diary, only at that time I brushed it off as total nonsence.

Unfortunately my body don't need any scientific evidence to get sick. It even goes further than that and gets violently ill from grain products that are scientifically proven harmless to celiacs.

I'm sure the oven advice is irrelevant to most celiacs, but not all of them and unless you try it you cannot know which of the group you belong to.
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#19 yolo

 
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Posted 10 April 2012 - 10:33 PM

I react to food from shared oven too. It was the only intolerance I discovered while keeping a food diary, only at that time I brushed it off as total nonsence.

Unfortunately my body don't need any scientific evidence to get sick. It even goes further than that and gets violently ill from grain products that are scientifically proven harmless to celiacs.

I'm sure the oven advice is irrelevant to most celiacs, but not all of them and unless you try it you cannot know which of the group you belong to.



Thanks Pac for substantiating the experience of at least some of us here.

If this experience is so rare, why is it that at certain chain restaurants like PF Chang's they now use dedicated ovens for the likes of us?? And why is it that my bf and I and another friend of ours all have suffered from eating food made in ovens also used for baking gluten??

IMHO a lot of what we experience has not even been begun to be researched by doctors and scientists. It is not from lack of opportunity, it is from lack of funding as well it seems as an overall bias against doing research on this subject called celiac and severe gluten sensitivity, not to mention other food intolerances. In addition IMHO there is the sacred cow factor. What could be more sacred than an apple pie or a big mac or a hot dog bun or pizza or a chocolate cookie for instance--and then to have to go further and really study the vagaries of cross contamination of gluten with some of us more sensitive folk, well dear ones that is generally not even on the page. Eventually someone famous enough will spur on or pay for this kind of research. For now I am not holding my breath.

It is my wish that certain folks here were a little kinder in their discourse. It makes me question my participation on this site, when here I am just trying to help someone consider all the possibilities, just as some have for me in the past. The original quester appreciated my comments. Why cast stones or get angry?? It simply is not needed. We are a community here to support each other IMHO, not bully each other or wave pointing fingers.
  • -2
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#20 IrishHeart

 
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Posted 11 April 2012 - 05:13 AM

Thank you, IrishHeart! My stomach is feeling so much better today, even if my head cold is not. I had some delicious stir fry for dinner and all seems to be well. I think moderating my eating is key, and that's something I should have realized a looong time ago. Good luck with your own wellbeing! Buttercream frosting sounds like it was worth it though. ;)



Yes, it was worth it! :lol: and my tight jeans prove it. :rolleyes:

Glad you feel better, hon. My guess is you just "overdid it". And I do not blame you--you should see what I ate the first time my friend (a professional chef) cooked for me. Let's just say...OINK! :D

One thing you might consider is offering your friends who will be cooking for you a flexible cutting board. I bought a package of 4 at Bed, Bath and Beyond--they come in pretty colors. They can be found on the internet, too. The friends who cooked for me used it and they keep it at their house. (The other friend who also cooked for me--the chef?--she bought one herself before I came, knowing it was a necessity. How sweet is that?)

They all know to borrow my colander, too if they require it.
Just some thoughts!

Some people in our lives "get it" and it sounds as if your friends do! Lucky you!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 lovegrov

 
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Posted 11 April 2012 - 05:29 AM

As the original poster sort of hinted, there's really no reason at all to be looking for a culprit here and I certainly wouldn't be grilling the hosts based on her "reaction." desperateforhealth ate too much one day, then didn't eat enough the next day, and maybe had a virus on top of that. It's really pretty much impossible to pinpoint anything given that scenario.

richard
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#22 Marilyn R

 
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Posted 11 April 2012 - 05:39 PM

Thanks Pac for substantiating the experience of at least some of us here.

If this experience is so rare, why is it that at certain chain restaurants like PF Chang's they now use dedicated ovens for the likes of us?? And why is it that my bf and I and another friend of ours all have suffered from eating food made in ovens also used for baking gluten??

IMHO a lot of what we experience has not even been begun to be researched by doctors and scientists. It is not from lack of opportunity, it is from lack of funding as well it seems as an overall bias against doing research on this subject called celiac and severe gluten sensitivity, not to mention other food intolerances. In addition IMHO there is the sacred cow factor. What could be more sacred than an apple pie or a big mac or a hot dog bun or pizza or a chocolate cookie for instance--and then to have to go further and really study the vagaries of cross contamination of gluten with some of us more sensitive folk, well dear ones that is generally not even on the page. Eventually someone famous enough will spur on or pay for this kind of research. For now I am not holding my breath.

It is my wish that certain folks here were a little kinder in their discourse. It makes me question my participation on this site, when here I am just trying to help someone consider all the possibilities, just as some have for me in the past. The original quester appreciated my comments. Why cast stones or get angry?? It simply is not needed. We are a community here to support each other IMHO, not bully each other or wave pointing fingers.


I'm very sorry. You're right.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#23 IrishHeart

 
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Posted 12 April 2012 - 05:22 AM

If it was me I would likely think I had been CC'd despite my hosts best intentions due to the fact you got D.


Maybe even take charcoal capsules at the beginning to absorb the toxins before they knock out so much of your villi.


With all due respect, not to quibble, but I wish to point out that having a bout with diarrhea does not always mean it is from gluten ingestion. It can occur for many reasons: another food intolerance, too much sugar, a stomach bug, dairy, poor digestion, a medication side effect.

Charcoal tablets are used in the case of food poisoning. Many people suggest they are useful after gluten CC. Maybe so, but they act like sponges in the gut. Be careful of using these to an extreme as they will also absorb EVERYTHING else in the gut, including essential vitamins, minerals and nutrients. If you do choose to use them, be sure to drink plenty of water or you will feel really dehydrated, which is the last thing you need when you are already experiencing diarrhea.

In all of my research, I have never read that one small hit from gluten CC is going to "knock out a lot of villi". It will start the inflammatory process for sure, but it takes a long time for villous destruction to occur. Let's not scare the beejeepers out of a newbie. :lol:

Meanwhile, she knows what it is---as was suggested, she ate too much with a tender gut---and has already recovered.

Sometimes, it is just a case of the obvious.
Still healing the gut--too much to process down there.

IMHO
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 cavernio

 
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Posted 12 April 2012 - 05:29 AM

I thought I might have been glutened cuz I felt like I had the flu and I had eaten something that may have contained gluten. Then my bf got the same symptoms, so it really was a flu.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#25 IrishHeart

 
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Posted 12 April 2012 - 05:33 AM

Sorry, just had to mention that this comment "I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend" is not substantiated. (No medical or scientific articles to back that up.)

It's been questioned before. No offense to the OP, she's given me good advice before, but I personally do not agree with the oven advice. I'm very sure it it irrevelant. :angry:



For the record, I do not see how any of these comments can be construed as "pointing fingers" or as "bullying." There are no accusatory or unkind words here. None at all! She just said she does not "personally agree".
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#26 Ninja

 
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Posted 12 April 2012 - 06:00 AM

The thing is, you could literally drive yourself insane trying to figure out why your body reacts the way it does. What has helped me the most is telling myself that yes, I obviously reacted to something but I don't necessarily need to know what it was. It would be nice to know... but I know that usually when I've reacted it's because I've strayed from known safe foods to eating a bunch of new foods all at once (I get excited when I'm feeling better). Actually, yesterday I tried eating a homemade pizza... last time we tried it, I reacted... but I tried it again. I reacted! It could have been the shared oven, shared kitchen, shared can opener, the actual ingredients, it could have just been too much, or it could have been a combination. If you are new to the gluten-free diet, or even somewhat new keep chanting to yourself: there's a STEEEEEP learning curve!

I can't remember if you said you tried digestive enzymes. I've heard really great things about using them to help with accidental cc or glutening. Maybe that is an option if this happens again...?

I know it's super frustrating, but you aren't alone! *hugs*

~Laura
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#27 IrishHeart

 
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Posted 12 April 2012 - 06:10 AM

Actually, yesterday I tried eating a homemade pizza... last time we tried it, I reacted... but I tried it again. I reacted! It could have been the shared oven, shared kitchen, shared can opener, the actual ingredients, it could have just been too much, or it could have been a combination.

I can't remember if you said you tried digestive enzymes. I've heard really great things about using them to help with accidental cc or glutening.


Two things to consider here, hon:

If you were reacting to a shared kitchen, it would be ALL THE TIME. But you are not sick all the time, right? :)

You tried a pizza specifically to see how you respond and you got a specific "reaction". (now, it could be the CHEESE??) See, you may have a dairy issue as well.

Digestive enzymes are taken BEFORE a meal to help digestion in people with impaired enzyme production from pancreatic insufficiency or in folks with lactose intolerance.
They do help. I used them when I was first DXed and still do when eating fats.

However, they are not a "gluten eradicator". If they were, people would be buying them and eating donuts.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 Ninja

 
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Posted 12 April 2012 - 06:21 AM

Oh sure – it COULD be anything. :blink: I suspect it was just too much (I've been fine with cheese as of late).

I think people use digestive enzymes for all different reasons. Typically, they are used as you have described... however, like I mentioned earlier, I have heard people have had good results when using them to help with accidental exposure to gluten via glutening or cc (before is better... if you suspect something might give you grief..). Of course, I am NOT suggesting the use of digestive enzymes instead of a gluten-free diet... just as something else to try. :) I'll see if I can pull up some articles... though it may just be anecdotal.
  • 0

Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 


#29 IrishHeart

 
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Posted 12 April 2012 - 06:31 AM

I'll see if I can pull up some articles... though it may just be anecdotal.



I have read them. They are. ;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#30 Ninja

 
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Posted 12 April 2012 - 07:51 AM

I also just wanted to add one more thing about the shared kitchen concept: unfortunately, with a shared kitchen, one cannot predict where gluten has been (especially with uncooperative family members). The kitchen is NOT always the same, so no... one should not necessarily exclude the possibility of cc just because one is not reacting every time, IMO. Different circumstances change everything.
  • 0

Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 





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