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If You Have Celiac Disease, Would You Keep Your Children Gluten Free For Life? (I.e. From Birth To Death)


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Poll: If You Have Celiac Disease, Would You Keep Your Children Gluten Free For Life? (I.e. From Birth To Death) (43 member(s) have cast votes)

If you have celiac disease, would you make your children follow a gluten-free diet?

  1. I'd keep them off gluten and make sure they always ate gluten free for life (or at least until they were out of home...) (21 votes [48.84%])

    Percentage of vote: 48.84%

  2. I'd introduce gluten into their diet when I feel it's best and test them annually with Cyrex/EnteroLab/Other Lab for gluten problems. (10 votes [23.26%])

    Percentage of vote: 23.26%

  3. I'd allow them to consume gluten and introduce foods at the time I feel it's best and only take action when they start showing symptoms. (12 votes [27.91%])

    Percentage of vote: 27.91%

Vote Guests cannot vote

46 replies to this topic

#31 beebs

 
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Posted 05 April 2012 - 05:05 PM

PS - isn't it generally acknowledged that the label 'IBS' is Dr speak for "I don't know, you have stomach issues, but I just don't know what they are". That is what I am getting the more reading I do on the subject.
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HLA DQ8, gluten-free since January 2011

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#32 Lisa

 
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Posted 05 April 2012 - 05:18 PM

There is much interest on this topic. Perhaps a new topic:

"Autism Spectrum Disorder and Celiac Disease"....would be a great NEW topic.

Who would like to begin?

...so it won't be lost on this topic. :D
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Lisa

Gluten Free - August 15, 2004

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#33 IrishHeart

 
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Posted 05 April 2012 - 06:11 PM

There is a recent thread already discussing the rise in autism ...

http://www.celiac.co...-autism-rising/
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"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 

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"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.
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#34 IrishHeart

 
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Posted 06 April 2012 - 05:21 AM

There are some articles here, if anyone is interested.

https://sites.google...utenfree/autism
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"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


#35 SGRhapsodos

 
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Posted 18 April 2012 - 05:57 AM

I work with ASD kids and I can tell you the diet doesn't make a difference. The only thing it wil do is make the kids have less stomach problems IF they're already celiacs. On another note, I cook everything gluten-free at home, but when we go out, I allow my child to eat breaded chix tenders and junk if he wants. I also make him sandwiches with regular bread for school. Cc has never been an issue in our family b/c I just avoid grains all together, so we don't share a toaster, etc. My hubs has a gluteb corner where I also make my son's sandwiches. I don't see the need of having a child go gluten-free if they're not showing symptoms.
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#36 mommyof4

 
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Posted 19 April 2012 - 12:57 PM

This is a very interesting question...my husband & I are in the middle of figuring this out ourselves right now. I was diagnosed Celiac 6 months ago. I got really sick & ended up spending 2 weeks at Mayo Clinic getting testing done...I am still in recovery mode, but improving. Because it is hereditary, we had our 4 children (ages 7-14) tested. Two of them carry the DQ2 gene. One of those has active Celiac...diagnosed through the Celiac Panel blood test. My husband is not Celiac and 2 of my children are for sure not.

So, lots of changes for us. Almost all of the cooking I do is gluten-free. Our evening meals we eat as a family are 100% gluten-free & any cookies, bars or other treats I make are also gluten-free. However, I do still make some favorite gluten items for the non-celiacs in our home...like homeade caramel rolls...as they are a favorite...I don't eat them, obviously. I don't feel like everyone should have to give up everything if they don't have to, yet I know there is a risk of cross-contamination.

With that said, as a Celiac, and a mom of both Celiacs & non-Celiacs, the reality is that our whole family needs to get used to this change & I want it to be as positive as possible. We have years of birthday parties, graduations, weddings, etc. to look forward to & we will probably always have gluten & gluten-free cakes at all of them. I want all 4 of my children to learn to cook g.free.

It is such a personal decision to figure out what works best in your own home.

As far as having children, even if I had known before having children that I am Celiac, I would definately still have had them! Being Celiac is not a horrible thing...just challenging. I often think how thankful I am that changing my diet can increase my health...we are fortunate. There are many people that cannot improve their health with diet. Again, a personal decision, but children are such a blessing! Get connected with a fabulous doctor that can be an encouragement & keep an eye on your health & your child's health...that would be my suggestion if you have children...Celiac or not.
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#37 1desperateladysaved

 
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Posted 08 May 2012 - 12:27 PM

I have 7 children and think it unlikely that they do not have an intolerance. I believe in training them in the way they should go. I would not want to cause them harm by letting them eat it. I think that we can all find good things to eat without gluten. For my children though they are old enough to decide for themselves. I am hoping for results in me that they can see. I don't want to watch any of them suffer as I have. It will be good for them if they don't have to discover the problem for themselves, but they learn from Mom.
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#38 cavernio

 
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Posted 10 May 2012 - 07:05 AM

Absolutely it doesn't mean it causes it - but with if its true -that ASD people are 10 times more likely to have Celiac then it is Absolutely worth keeping in mind. It should be studied, as you are probably aware the number of ASD children has risen to 1 in 110 - it was 1 in 160 a couple of years ago. There is obviously something going on. Celiac is on the rise as well, and so are all the other autoimmune diseases. If they are linked then I want to know about it.

My two suspected celiac children are currently being assessed for autism - my two non celiac children are healthy happy and generally not sickly. I am beginning to wonder what it all means and why it all seems to happen to those two.


The connection between autism and celiac disease could easily be a genetic linkage, which means that they might not have anything to do with each other at all. In other words the genes that are necessary for celiac disease may be physically close to the genes that are necessary for autism to develop. Note that being physically close together doesn't mean that those genes encode the same type of thing either. It's much simpler than that. During mitosis, where gene segments from one parent randomly swap places with genes from the other parent, if 2 genes are side by side on the same chromosome, they'll likely remain side by side. This is what's called genetic linkage. The farther apart genes get, the more likely it is they'll be split up. If they aren't on the same chromosome at all, there should be no connection.

I do agree though that there is something going on in the environment to cause increases of auto-immune disorders though.
My bet's on plastics atm. The timeline makes sense and that we haven't found out specifics yet makes sense too. They've only be introduced into society this century. Only around the 1950's (I think?) were they becoming ubiquitous, which means only since the 1970's have mom's been giving birth to kids while they themselves might be passing along the stuff to their fetus. Every year there seems to be another warning about potential harms of specific types of plastics. And in the case of BPS, for example, it's only in tiny amounts from where it has weird effects like mimicking hormones. In larger amounts the immune system recognizes it for what it is, something that shouldn't be there, and I guess it's only that type of reaction that is measured when considering the toxicity of materials.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#39 Ollie's Mom

 
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Posted 11 May 2012 - 07:06 PM

I work with ASD kids and I can tell you the diet doesn't make a difference. The only thing it wil do is make the kids have less stomach problems IF they're already celiacs.


I must have missed this post. This is from almost a month ago.

In any event, I must completely disagree with your statement that a gluten-free diet doesn't make a difference for those with an ASD. I would not have an issue if you said it didn't make a difference in ALL cases, bit I know from experience it makes a difference for some.

I am autistic and I can assure you that being gluten-free has a huge impact on my ability to relate to others and the world in general. When I have been glutened, I feel much more estranged from people, am more sensitive to sound / odours / touch , cannot express myself and am prone to meltdowns. I describe it as feeling "more autistic". Being on a gluten-free diet doesn't make my autism disappear, it just makes it much more manageable and tolerable.


Saying there is no impact on those with ASD is a very closed minded position to have.
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#40 ~**caselynn**~

 
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Posted 18 June 2012 - 05:27 PM

This is an interesting poll. If I may say I've enjoyed reading others thoughts. I have to say that I'm torn between keeping a child completely safe and gluten free and letting them eat as they wish and deal with the consequences if there ever are any. At this point in my life I'm not a mom but am an "auntie" (cousin actually, but whatever lol) and I'd do anything to protect that little boy. Which makes me think I'd choose choice "A" lol. On the other hand, my mom always taught us clean, healthy eating. Passing that thought process along could possibly mean never running into gluten, wouldn't that be an amazing thought? I was so sick for so many years, I've seen my poor mom stand by me time and time again(she's amazing!) I would hate to pass that on to a child knowing they may have the gene, but there are worse things than being Celiac don't you think? Especially when you've got the knowledge in front of you to help them! If the glass is half full then this is a chance to redeem your health and get back to your hippie roots as we were all meant to be! What child wouldn't thrive with a parent who's a Celiac to guide the way and help them? And let's face it, I'm not even a mom and I can make some of the best darn cupcakes in town, gluten free ofcourse! So i know you Celiac moms out there are rocking the goodies haha That's got to count for something!!! 😃
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#41 nvsmom

 
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Posted 06 July 2012 - 03:18 PM

I have friends who are non-celiacs who have essentially gluten-free homes just to improve their health. Their kids grew up with it so it's no big deal for them.

My kids, on the other hand, have eaten like a typical Canadian for 9, 7 or 5 years so it will be harder to switch them over to a healthier gluten-free diet... which I am slowly planning on doing.

The wheat, barley, and rye (and corn) we eat today is soooo genetically modified it barely resembles the grains our great grandparents used. Our bodies are really not designed to consume that stuff as it is now...
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#42 justlisa

 
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Posted 24 July 2012 - 04:49 PM

Excellent question!

Personally...knowing what I know now...I would ABSOLUTELY raise my son gluten-free... Without a doubt in my mind...

I agree with those who said they don't see it as a "punishment"... There's a lot to learn...yes. Takes more effort...yes. Challenging...for sure. BUT IT IS HEALTHIER. Of course, if you are just "substituting" an old, unhealthy "processed" diet with a new, gluten-free "processed" diet...well, you're still just eating "junk", imo...

For me, all that I have learned about the dreaded "gluten", has simply knocked home how bad we've come to eat...live. Case in point: My best friend and I were pregnant at the same time (the kids are 2weeks apart). Her daughter was dx with leukemia at 18 months (she is alive and well and beautiful today...THANK GOD). But, I remember well what her Dr. at Yale-New Haven told my friend, at the time: We live in a cesspool...of chemicals, contaminants, modified this and that... And that it happened SO fast that it is virtually impossible to ever learn the true connections...the impact that this cesspool will/has had on "us". These words have never left me, but learning about celiac/gluten intolerance has really brought it into focus for me.

You see, I, actually, get kind of grossed out when I think about the "junk" now...thinking about putting it in our bodies.

I really believe it's a state of mind...Instead of thinking about all the "goodies" that I can't have, I just feel good that I'm not n that ride anymore... And I want that for my son...above all else.

Fanatic? I don't think so... Realist? Yes...
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#43 Adalaide

 
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Posted 24 July 2012 - 08:59 PM

After 6 rather than 2 months gluten free myself, I can say I certainly haven't changed where I would stand on the issue. Looking back I would certainly have kept my children both gluten free. If it is possible that serious illness triggered celiac at all, it was triggered at 2 months when my oldest was hospitalized with RSV and pneumonia. While not medically confirmed she is certain she has celiac and can not wait to leave her father's house next summer so she can go gluten free. Her several month long gluten free stint brought loads of relief, even though she realizes after talking at great length to me that it was more like gluten light. My youngest shows no GI symptoms but has has behavioral problems her whole life. Maybe they're completely unrelated and being gluten free wouldn't have helped at all, but maybe it would have. It literally could not have hurt her.

Honestly though, I saw that there was some debate about the issue (and there is no right or wrong, just personal opinion) but if I had known then what I know now, I wouldn't have children. I love them more than life itself and would sacrifice anything for them, and that includes the joy they have brought me just by having them in my life. I had children out of a selfish desire to be a parent. My doctor is sure I have either lupus or MS but because my insurance sucks we're at am impasse on how to reach a diagnosis of either. I spend every day of my life in pain, which since going gluten free I can only rate a 3-4 most days on the doctor's magic little pain scale. The times it becomes migrating pain I spend weeks at a time debilitated, unable to even get out of bed. My doctor with little other options writes me prescriptions for narcotics telling me he knows I may get addicted but that he can't do anything else for me. When I'm lucky I'm within my window where I can use a course of high dose steroids. If I don't eat tyramine free I'll could go blind. I pray every night that my celiac and endometriosis is the worst my oldest daughter gets from me. If I had it to do all over, I'd spare her the only way that there is.
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#44 GottaSki

 
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Posted 24 July 2012 - 09:29 PM

It took 42 years of mis-diagnosis before I learned about celiac disease and gluten free -- had I known I had celiac disease and carried a pair plus one celiac gene before my kids were born I would have kept them gluten free in our home and dealt with any problems of them ingesting gluten outside the home if they arose.

Would love to be able to re-do all of our diets for at least the last 20 years! Sure would have made a huge improvement in all of our health - we all have wide range of autoimmune problems that likely would have been greatly improved had we known earlier.

This case of 20-20 is a tough one to swallow many days :(

p.s. oops...just realized I had already answered this months ago -- currently have a hefty dose of brain fog ;)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#45 Giambi

 
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Posted 25 July 2012 - 03:56 PM

I say no way! Let them enjoy gluten like most people do. I can't imagine growing up without enjoying pizza's and cakes, and bread. I know they make gluten free alternatives to all these foods, but so far as I can tell the alternatives are pretty blah.
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