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Do You Take Your Celiac Disease Seriously?


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50 replies to this topic

#16 nvsmom

 
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Posted 28 September 2013 - 03:06 PM

Yes, you would leave so that I'd have time to bake some other delicious gluten-free baked good!  And....if it's later in the day, a glass of wine or a nice cocktail!   If I could just get back cheese!!! 

Cheese... after over a year gluten-free, I'm dabbling in some dairy again but I'm afraid to restart cheese because I don't think I could stop again.  LOL

 

I take the diet very seriously for two reasons:

  1. I was diagnosed in middle age so I had developed more AI diseases and  painful problems that were getting really hard to ignore. With the way things were going, I could clearly picture myself as a balding, stooped over 65 year old who needs a walker to get around and couldn't open a bottle if my life depended on it. If I had been diagnosed 20 or 30 years earlier into this disease I could see having a harder time staying gluten-free simply because the stakes weren't so high yet - I hadn't lost so much at that time.
  2. My kids have issues with gluten and there is NO WAY I will let them experience the health problems I've had just for convenience or a treat. I model healthy eating, spend a tonne on fresh foods and organics, and don't let them near gluten in the hopes that they will grow up to be healthy... I won't risk them.... I'm going all mama-bear here.  LOL ;)

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#17 weluvgators

 
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Posted 28 September 2013 - 03:34 PM

 
I met a lot of patients at the ICDS.  Very few had even heard of all the nonsense we see pop up on here about "cures" and "cross-reactivity" and "hidden gluten".  Most had never heard of all these do it yourself labs and were clueless why someone would even think of spending money on unproven tests.


I take my celiac disease seriously. I also take my children's celiac disease seriously.

And I was incredibly disappointed to see "hidden gluten" lumped into a statement about "nonsense" like "cures". There are reputable researchers and reports detailing that celiacs respond to varying levels of gluten. And some celiacs have to go further than others in achieving the gluten free diet that works for them (that is also documented by reputable resources). Our family's initial lack of understanding that there can be gluten in "gluten free" foods kept us sicker for longer than we needed to be.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#18 kareng

 
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Posted 28 September 2013 - 03:56 PM

I take my celiac disease seriously. I also take my children's celiac disease seriously.
And I was incredibly disappointed to see "hidden gluten" lumped into a statement about "nonsense" like "cures". There are reputable researchers and reports detailing that celiacs respond to varying levels of gluten. And some celiacs have to go further than others in achieving the gluten free diet that works for them (that is also documented by reputable resources). Our family's initial lack of understanding that there can be gluten in "gluten free" foods kept us sicker for longer than we needed to be.


I should have clarified what I meant by hidden gluten. I meant all the people on the Internet insisting there is gluten added, on purpose everywhere - envelope glue, coffee beans, etc. There is a company trying to imply that manufactures add gluten to make us sick...that sort of stuff. The doctors did say that, from their research and experience with patients, about 1-2% have difficulties with extremely small ppm of gluten. They also acknowledge that there is no way, except perhaps in some sort of bubble, to have no gluten or germs or dust, etc in our food. We just have to do the best we can.
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#19 psawyer

 
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Posted 28 September 2013 - 04:41 PM

I wasn't going to say anything, but as this is still going...

I take my celiac disease seriously, but I do not become obsessed by it.

I read ingredients carefully. I would never knowingly eat anything that contains gluten.

I do trust reputable sources such as the Canadian Celiac Association (as just one example) when they say that an ingredient is safe. The one that comes to mind immediately is tocopherols. The CCA declares them to be safe in food, yet I see people here fretting about them in shampoo.

If you Google, you can find something somewhere that claims that there is "hidden gluten" in just about anything. But even if it were hidden in, say, floor wax, it would not be an issue for me--I don't eat the wax, and I don't use my floor as a food preparation surface.

Processed foods? My villi have fully healed. I have a couple of other issues besides gluten. But I eat foods from manufacturers that I trust. That list is long, but includes General Mills, Kraft and Unilever, among others. I live in Canada, and here any gluten must, by law, be disclosed on the label. I realize that in the US barley can still be hidden.

Shared facilities? If you ever eat at restaurants, don't rant about shared facilities at a food manufacturer. With extremely rare exceptions, not only are restaurants shared facilities, but--the horror--they have shared equipment (cutlery, dishwasher, plates, etc.).

So that was a bit of a rant, but in summary, I do take it seriously, while being pragmatic and realistic.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#20 eers03

 
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Posted 28 September 2013 - 06:44 PM

Yes.


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#21 IrishHeart

 
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Posted 28 September 2013 - 06:47 PM

Peter, I agree.

I was recently given a clean bill of health by my GI who once worried if I would have refractory sprue.  (ok, there is a bit of intestinal wall scarring from the celiac disease but he says that's not unexpected) but, for someone who was as sick as I was, my nearly 3- year recovery was

accomplished while I (1) ate out and traveled (2) used shampoo with-- gasp! hydrolyzed wheat protein and (3) drank coffee and licked envelopes.

 

 

Despite the prevalence of these "celiac myths" many of us very ill people somehow managed to recover and live full lives.

 

It comes back to reading labels, being informed, losing the paranoia and realizing that this is not rocket science.

And as Karen and Gemini have pointed out....common sense.

 

to quote Nicole, I WAS

 a balding, stooped over 65 year old who needs a walker to get around and couldn't open a bottle if my life depended on it. 

 

BUT NOW, I AM NOT.  :) I am aging backwards, getting stronger each day and life is good. 


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#22 answerseeker

 
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Posted 28 September 2013 - 07:37 PM

I wasn't going to say anything, but as this is still going...

I take my celiac disease seriously, but I do not become obsessed by it.

I read ingredients carefully. I would never knowingly eat anything that contains gluten.

I do trust reputable sources such as the Canadian Celiac Association (as just one example) when they say that an ingredient is safe. The one that comes to mind immediately is tocopherols. The CCA declares them to be safe in food, yet I see people here fretting about them in shampoo.

If you Google, you can find something somewhere that claims that there is "hidden gluten" in just about anything. But even if it were hidden in, say, floor wax, it would not be an issue for me--I don't eat the wax, and I don't use my floor as a food preparation surface.

Processed foods? My villi have fully healed. I have a couple of other issues besides gluten. But I eat foods from manufacturers that I trust. That list is long, but includes General Mills, Kraft and Unilever, among others. I live in Canada, and here any gluten must, by law, be disclosed on the label. I realize that in the US barley can still be hidden.

Shared facilities? If you ever eat at restaurants, don't rant about shared facilities at a food manufacturer. With extremely rare exceptions, not only are restaurants shared facilities, but--the horror--they have shared equipment (cutlery, dishwasher, plates, etc.).

So that was a bit of a rant, but in summary, I do take it seriously, while being pragmatic and realistic.


Peter, do you have a list of safe manufacturers or is there a resource out there?
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#23 psawyer

 
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Posted 29 September 2013 - 07:02 AM

Peter, do you have a list of safe manufacturers or is there a resource out there?

Here's a list of companies that have a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc."

Here is another resource.

Not mentioned in either one is Campbell's, but I trust them as well. Beware, though, Campbell's products differ in formulas between Canada and the US.
  • 0
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#24 answerseeker

 
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Posted 29 September 2013 - 07:48 AM

Thank you! Very helpful. I wonder about seasonings/flavorings so I would much rather buy from brands that put it right on the label
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#25 answerseeker

 
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Posted 29 September 2013 - 07:56 AM

I came across a you tube video saying that celiac is caused by use of antibiotics! And another one about cross reactivity. There is a lot of misinformation out there. If it wasn't for this forum and the books that were recommended to me from you guys, I would be so confused about what I could eat!

Now I know some do have problem with corn, I don't, but to say it can cause the same symptoms of gluten and to never eat it again is a little silly. If I watched that video before coming here or getting informed from reputable resources I would cut corn and rice and be left with minimal options for food. I eat rice chex pretty much every morning for breakfast and have never been sick from them
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#26 1desperateladysaved

 
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Posted 29 September 2013 - 08:09 AM

I surely take my celiac seriously.  I think we would all agree one may have other intolerances,  I believe they  may not be distinguishable with reactions from celiac.  I react to corn in a similar fashion, and can't eat rice for now.  There could be something else in me that causes these struggles besides celiac.  What difference does it make to me what besides celiac causes my problems, if for now I can't eat them?

 

Just now, I don't really care what I can't eat, just so long as I feel better.  Something must be right!


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#27 answerseeker

 
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Posted 29 September 2013 - 08:17 AM

I surely take my celiac seriously. I think we would all agree one may have other intolerances, I believe they may not be distinguishable with reactions from celiac. I react to corn in a similar fashion, and can't eat rice for now. There could be something else in me that causes these struggles besides celiac. What difference does it make to me what besides celiac causes my problems, if for now I can't eat them?

Just now, I don't really care what I can't eat, just so long as I feel better. Something must be right!


Very true! The only other intolerance I've developed is dairy. Hoping it stays that way lol. I think I would be lost without rice :-)

Although I had cramping yesterday after eating eggs. This morning i have a little rash but not horrible. But my hubby made them and he used a Tupperware container to mix them that was used for storing gluten foods. Hoping it was a cc issue I don't want to give up eggs!
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Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#28 GF Lover

 
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Posted 29 September 2013 - 08:49 AM

I wish to thank those who participated in this Discussion on the seriousness of Celiac Disease.  And to also thank those who continue to help the new members make their own way to better health.

 

Colleen


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#29 answerseeker

 
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Posted 29 September 2013 - 08:56 AM

The admins should pin a list of "celiac myths" like the newbie 101 thread. I think a lot of people come here with misinformation, including myself!
  • 0

Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene


#30 kareng

 
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Posted 29 September 2013 - 09:46 AM

The admins should pin a list of "celiac myths" like the newbie 101 thread. I think a lot of people come here with misinformation, including myself!

Whenever we debunk a celiac myth with proof people argue it is true anyway. I see that the univ of Chicago Celiac Center has this problem on their Facebook page. For some people, a blogger calling themself a healthy home economist or celiac coach are more of an expert than actual MDs and researchers. This in where I think we need to use common sense. If people want to believe something, even with valid evidence to the contrary.... Well... I better stop now. :)


This is a great place for easy to understand facts. You can type in a search like " corn " or " envelopes" and get info. They don't have every crazy rumor you might hear but they have a lot.

http://www.curecelia...-contain-gluten
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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