gluten-free questions - Mothering Forums

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#1 of 5 Old 01-26-2012, 04:48 PM - Thread Starter
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We are looking at giving a gluten-free diet a try as a family.  I don't think anyone is "allergic" to gluten or celiac, but I want to rule out sensitivities, at least.  I told my parents (who take care of my children sometimes) today, worried for their reaction.  My dad said that we shouldn't cut out all gluten or our bodies will forget how to digest it, making us sicker if we have it in the future.  I understand his argument, but I'm not sure what to say to it.  Is there any information or research on this?  


I feel like, if any of us is already sensitive to it, then it's not good for us and our body isn't digesting it properly anyway (or other things because of the gluten).  I'd like some hard information to back me up, though.  TIA!


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#2 of 5 Old 02-02-2012, 12:04 PM
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This is interesting and I do agree.  Think of it this way, if you have a stream that is loaded with sticks and twigs and mud and some trash you won't really notice the 'new' soda can that has been thrown into the water and is now floating alongside of the rest of the muck.  Should you clean out the stream and leave it clear and running nice, well than you will sure notice the soda can as soon as it hits the water.  KWIM?


Your dad is correct and if you venture down this road things will for sure never be the same as they are today.... But that doesn't mean you should keep eating food that is not being properly digested.  It just may be a much bigger thing than you originally planned for....


Follow your instincts is what I would advise.

not all who wander are lost
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#3 of 5 Old 02-02-2012, 01:05 PM
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In "Celiac world" many people report being asymptomatic before diagnosis, going GF and reporting serious issues if they are "glutened".  Now I am not sure that it would be the same for someone who does not have Celiac or an intolerance.  


There is also "oral immunotherapy" being tried for allergies where you feed very small amounts of an allergen to a person and increase it over time to develop a tolerance to it.


Between these two totally antidotal instances, maybe there is something to what your father is saying.

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#4 of 5 Old 02-02-2012, 10:31 PM
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Hi there,

We have had some recent experience with this.  First, in my opinion, do not go off gluten until you test.  No one told me that--not even the parents of the two cousins with true diagnosed Celiac Disease.  We are in the midst of a chaos of testing and diagnoses because we went off gluten before we tested.


All that said, the tests are relatively easy and inexpensive ($27 without insurance for the Celiac panel and for us $2.70  with insurance).  And, if you test negative for Celiac and still want to go off gluten (which I also agree with) then you don't mess up any tests (you need to be on gluten to test accurately). 


Here's our chaos, for what it's worth:


DD1:  Did not suspect anything.  Left her on gluten.  Tested for Celiac Disease because suspected DD2 might have an issue.  DD1 tests positive for Celiac Disease.


DD2:  Struggled with misc. complaints, primarily itching and "growing" pains.  Took her off gluten. Problems resolved.  Put back on "light gluten" to test.  DD2 test negative for Celiac Disease.  (This is now I have to decide if she is off gluten forever or just "light gluten", etc.).


DH:  Since this seems to be a genetic disease from his side, do both genetic and Celiac Panel.  He tests negative on all.


Me:  I went "light gluten" as I weaned DD2 off gluten.  Had some major embarassing incidents (ahem, pooping in my running tights on a 5 mile run--gross!--after eating a piece of toast after having had no gluten in my system for awhile).  Tested myself on genetics (I have both Celiac Disease genes) and I tested negative for Celiac Disease.


Sound confusing?  It is.  Test first and then pull yourselves off!  

Tough on extended families?  Yep.  My Mom gently asks if we're GF yet every time she wants to hand out Oreos.  (We're not yet--we're deciding on whether or not we biopsy).


Best book to read:  Celiac Disease b y Green and Jones

Sites to scour:  especially the handouts


Net/Net:  Don't go off gluten until you do the tests.  Then, based on results* decide if it is a LIFESTYLE/PREFERENCE choice or a LIFE/DEATH choice.  I purposely made this in all caps.  If you have Celiac Disease, the only way to manage the disease and not get really sick or die from related illnesses is to stay off gluten 100% forever.  (DD1 will likely have to be GF forever).  If you decide gluten is just plain bad news that is fine too.  (This is likely for me--I have no desire to repeat my running disaster ever again.  I have the genes to develop CD and my body does better without gluten--less bloating/flatulence, etc.).


*Note:  a positive test on the Celiac Panel generally means CD is highly likely.  A negative test on a Celiac Panel is less reliable.


Hope this helps.

Thinking of you!

And, GF isn't that hard or that bad! 

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#5 of 5 Old 02-02-2012, 10:36 PM
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And I should add on things I've learned:

- skin tests are more reliable for allergies than blood tests


And for grandparents:

- fruits and veggies have zero gluten ;)

- most ice creams (plain, no cookies!)  are ok if they need to "treat" grandkids! :)

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