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Do You Take Your Celiac Disease Seriously?
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51 posts in this topic

Being in the community for some time, I see many differing attitudes concerning Celiac Disease.  It is very satisfying to guide someone through the ins and outs of adopting a new gluten free lifestyle.  These people commit to change and reap the results of good health and go on to live life.  These are the success stories.

 

However, there are two sides to every story. 

 

I also see a lot of nonsense.  It's the nonsense that has me banging my head on my laptop.  Celiac Disease is one of the easiest Diseases to control.  You stop eating gluten.  No bells to ring, no whistles to blow.  Just stop eating gluten.  It is very clear what you can and cannot eat, right?  AND, the real kicker is that if you don't know if something has gluten, you DON'T have to eat it.  This is a choice.  A choice between being healthy or inviting disease.

 

All the best.

 

Colleen

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I take it seriously.  I choose to educate myself by attending medical conferences like the International Celiac Disease Symposium and reading info from reputable websites and studies and using a little common sense.

 

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.

 

It is understandable that people who are new to Celiac will have questions - some may seem stupid but that is OK.  However, it is frustrating to see the same person doing the same bad behavior repeatedly and then wondering why they feel bad. 

 

One thing I try to remember is that, the posts on this forum are not a good representation of the diagnosed Celiac population.  Most Celiacs are living in the world and doing fine.  We rarely hear from them.  They rarely read or participate in forums.

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Well Said Karen.

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Extremely. It is my LIFE, after all. My hubby and family need me. :-)

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*i* do!  ms k, i see what you are saying - we hang around here to try to help people - most people who are new come onto this website, glean the info they need and move on.  so we have sort of a unique view of the celiac population.  but here's some things i have experienced:

 

i have one other celiac that i know in my town, and we belong to the same club.  we meet every few weeks and i bring my own dinner.  he eats the catered meal, with all the gravy and bread, etc!  i have known his wife for some time and she is a very intelligent woman, and no shrinking violet.  i talked with her  a little after the last meeting and asked 'what's up with your hubs?  i thought he was diagnosed - doesn't he know that eating all that stuff is going to cause him pain in the short and damage in the long run?"  she said, yes, he did all the education stuff on the disease in the beginning so he knows.  she tsk-tsk'd and said 'he will pay for it later and he knows that.  i have argued with him all that i am going to.  he is a grown man and makes his own decisions' 

 

my neice's friend is diagnosed and she is 24.  munching on pizza, eating doughnuts, etc.  i said:  WHAT ARE YOU DOING (she is a REGISTERED NURSE for crap's sake!!  she works in a hospital!)  she said:  i know, i know.  but i'm gonna live a little first.......  (SMH!)

 

so, i guess people who are *interested* in feeling well and living normally are vigilant/strict with their diets and we probably will see them on here every now and again if they hit a snag or have a question only this community would be able to answer. 

 

the people who are frustrating to us are ones who have been told to educate themselves but they just show up and report that they can't understand why they are still feeling like death when they haven't even tried to follow tried and true advice.

 

annnnd - i have a friend who thinks cutting out gluten will make her feel better - i said go for it.  but you have to do it all the way, or it won't work and you have to stick to it.  she calls me yesterday and says she ate at mcdonalds as a *reward*  for herself and now can't understand why she feels terrible.  i am not discussing gluten/gluten free with her any more.  she is on her own.  don't listen - feel $hi++y - now i don't care..................  she is still my friend, but i'm inclined to think she may actually like wallowing in self-pity........  :(

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Although I don't want to do damage to my gut for fear of cancer and lupus and all of the other horrible things that can happen to a celiac who eats gluten, I'll tell you a "secret". As a smoker, I have to admit that all of those long term scares don't always work. I KNOW smoking can cause horrible things too, but I haven't quit yet.

 

But if smoking could cause DH...

 

Yes, DH is my greatest fear. I have read enough and seen the pictures of those who suffer from it, and I know I too could be one bite of gluten away from having it myself. There is NO WAY I would EVER risk that! So when the long term scare tactics don't work on someone who is playing Russian roulet with their health, I think they should all be required to go to the DH section here and read every post, look at every picture. I'd be willing to bet quite a few of them would wise up and stay STRICTLY gluten-free.

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Barty,  I'm glad you brought this up.  Long term scare tactics don't always work.  What is the saying?  Out of sight, out of mind...   When we see an immediate reaction to ingesting gluten, the scare is very real.  Smoking, Bad diet, Weight, Sedentary Life Style and numerous other choices, can contribute to health issues down the road or they may not.  We just don't know the cards we will be dealt.  As a smoker my self I often worry about lung cancer.  I did get cancer but just not that one.  Makes you think eh?  I'm also told to avoid sugar but I will still enjoy a brownie and ice cream at times.  I guess all we can do is to make the best choices (for ourselves) regarding our health.

 

Colleen

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I agree with everyone!  

 

I've been fortunate (I guess) that my husband has been gluten-free for 12 years.  No, he wasn't officially diagnosed, but went gluten-free at the suggestion of my allergist (MD) and his GP (MD).   Through trial and error that first year, we both finally got the diet down.  Now after all these years and my official diagnosis, he refuses to do a challenge.  Does he have an intolerance or celiac disease?  We'll never know!  We do know that gluten is not for him.

 

So, the transition has been relatively easy for me regarding the diet.  What hasn't been easy is are the side effects from celiac disease (hyper & hypo thyroid, anemia, compression fracture of the vertebrae).  I haven't found a local group and my one and only celiac disease buddy has left the state.  Even though we call, it's not the same as hanging on the front porch drinking coffee and indulging in a gluten-free coffee cake.  That's why I hang on this forum.  

 

Each time I help someone, it reinforces my commitment to remain gluten free.  This forum gives me a chance to vent, ask a question (though someone usually asks first) or just chat.  It's nice to be circled by a group of people who are "walking in your shoes".  

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Nope. not at all.

Seriously? I would never read any relevant current research, change my entire household, diet and nutritional plan, read books by reputable celiac specialists, work on two websites dispensing free advice like skittles, counsel people in my community who need help learning the G F diet, compile a thread for the newly diagnosed, annoy the crap out of people to go get tested, do everything in my power to get well, work with a physical therapist for 2.5 years to regain muscle strength  or become a vocal advocate for celiac.

 

Why would I do all that? Just to live a long, healthy life and make sure others can too? bah! that's crazy talk..!!.and good health is over-rated. 

 

:lol:

ok, I'll be serious for a second...

Karen pretty much said what I would have said (so I will just say DITTO--what she said!!!) and add:

to anyone reading this thread, people who do stick around here after learning the ropes do so because they want to "pay it forward".

We were all newbies once too and people reached out to us.

 

We really do care about our fellow celiacs and if we sometimes seem a little "mother-hennish" or "tough love-ish" it's because we do not want any of you to suffer as some of us did. 

 

Make sense? ;)

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ABSOLUTELY! MY HUSBAND & I BOTH TAKE IT EXTREMELY SERIOUSLY. And we both happen to be some of those that Barty talked about who have dh. I'm not saying celiac disease without dh is any less serious than having dh added into the mix but dh sure will make you wake up & smell the roses!!!!!

And I choose to help people who come here, especially to the dh forum, because when I needed it, there were those here who helped me & I wish to pay it forward but those are not the only reasons..... I also have a real desire to help those who have dh & are maybe not as bad off yet as I was/am. I hope to help them understand what lies in store for them for years if they do not take the diet seriously & to help them understand that going gluten-free is not a magic, instantaneous cure for dh & to help them understand why dh will/can hang around so long after one is gluten-free.

I can't tell you how many celiacs who have been gluten-free for years have come on the dh forum with the rash after having gotten accidentally glutened. I will say that it is very difficult to have any sympathy for those who come on saying they cheated with a smiley & crying the blues because they now have dh. 

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 but it's not the same as hanging on the front porch drinking coffee and indulging in a gluten-free coffee cake.  That's why I hang on this forum.  

  

 

 

... if  someone would  bring us a tray with some coffee and cake, we'd probably never leave.... ^_^

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I think if cigarettes made people as sick right away as gluten does for most people, it would be easy peasy to quit. But they don't and it's not. 

 

I think it's easy to take being gluten-free seriously because I personally find this easy to do.  But I also like to cook and like all those veggies and things many don't.  I like eating healthy and don't like spending an entire night with my head in the toilet.  I also have 4 AI diseases already so really, I don't need anymore, thank you!

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.  I like eating healthy and don't like spending an entire night with my head in the toilet. 

 

 

me neither, unless I have earned it. 

drinking-wine-smiley-emoticon.gif

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... if  someone would  bring us a tray with some coffee and cake, we'd probably never leave.... ^_^

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!!! 

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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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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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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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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, 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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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?

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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.

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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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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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