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Grandson Has Been Tested


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#1 notme!

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Posted 17 April 2012 - 02:35 PM

so i am a diagnosed celiac and thriving on the gluten free diet. my adult son is type 1 diabetic and has decided he feels so much better on a gluten free diet, even if he hasn't been tested. he felt so good the first 4 days that he went and had a regular cheeseburger. he had such a bad reaction and is now convinced. grandson (who is 3) has the same "poop" issues: between D and painfully constipated. they took him to his regular pediatrician, who did blood tests on him and the results are not back yet. (i told them false negs were common... geez. i hope his comes back definitive... but anyway...) the doctor told him that if we put him on a gluten free diet it would be unhealthy for him.

IS THIS TRUE? and if so, in what way? i know gluten free is more of a hassle and also can be a little expensive, but, unhealthy? is wheat such an important protein that if he skipped it he would be missing necessary nutrients? sorry if this is a dumb question, but i never thought about it that way. as unhealthy in any way, i mean? son is convinced, like i said, but trying to get his mom on board.

btw - we are having a heck of a time potty training him :( poor little guy :( any suggestions are welcome....
  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#2 sa1937

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Posted 17 April 2012 - 04:22 PM

A gluten-free diet can be healthy or unhealthy...it all depends on what we eat. Think fresh fruits, veggies, meats, etc. Very unhealthy if it's replaced with gluten-free junk foods. So your doctor is wrong!!! And gluten-free can be expensive...or not. It's all a matter of choices.

If your grandson gets better eating gluten-free, hopefully Mom will get on board. Honestly, who wants to see their little ones sick if they can make a few dietary changes and have a healthy kid.

Sorry I can't be of help with the potty training...it's so long ago that I don't remember. My "kids" are in their 40's now. Posted Image
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#3 mommida

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Posted 17 April 2012 - 04:59 PM

The doctor is wrong.

A gluten free diet can be very healthy. Fruits and veggies, meat, and avoiding processed foods can be very healthy. If you compare gluten free egg -free bread (with holding brand name)it does have added sodium, less vitamins and minerals. Most gluten bread like (wonder bread) have been vitamin fortified in comparison. So I would suggest a multivitamin for a gluten free person.
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#4 IrishHeart

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Posted 17 April 2012 - 06:00 PM

Hogwash.

Gluten- free eating is probably MORE healthy for everyone!

MY GI doctor says our "diet" is better than the SAD (standard American diet) which includes food additives, chemicals, MSG and high fructose corn syrup and sugar. :blink:

As long as he gets a balance of lean proteins, beans, fruits, vegs, low-fat dairy, healthy fats and fiber, including alternative healthy grains like quinoa and buckwheat , he should be able to thrive nicely. :) Foods that are rich in folic acid (leafy greens and nuts) and other B-vitamins and antioxidants will provide him with all the nutrients he needs.

If he is alternating between D and C, he obviously is NOT doing well on a "regular diet". He may stop all that OFF gluten.

A dose of probiotics wouldn't hurt. And a good gluten-free Multivitamin!

Try it--- and if it solves the problem, hooray for all involved.

If it does not help, it could be the dairy. (replace milk with healthy Coconut milk and see if that does the trick)

Seriously, how can a diet rich in fruits, veggies, proteins and omega- 3's be unhealthy? geesh....Idiot "doctors". <_<
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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


#5 kareng

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Posted 17 April 2012 - 06:38 PM

We can give you lots of potty training advice and tips, but, until he can be somewhat regular on the pooping, it may be hard for him to learn.

I have 2 boys. For peeing, it's good to see Dad stand & pee. Let them stand and pee. Seeing it helped my boys. Also, when the weather is good, if you have a yard, let him run naked and point out when he pees. Just be relaxed and have fun with it.

In a few months, PM me if you need more practical tips or re- start this thread. My kids had some physical things going on too and weren't day potty trained until 3 1/2.
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#6 mamaupupup

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Posted 17 April 2012 - 07:42 PM

I agree with Sylvia and others that a gluten-free diet can be healthy, depending on what is eaten. Our pediatric GI who is also a Celiac Disease researcher believes "no one needs gluten to be healthy."

Also, BOTH our pediatric GI's (one is in our hometown, the other is at Children's Hospital LA) have set us up with consultations with nutritionists. Our first consultation is this Friday, so I don't have much to report yet on helpfulness, but talking to a nutritionist could provide some sense of confidence.

From a Mom's perspective, going gluten-free can be daunting at first...especially when she feels she already has her hands full...wants to get her boy potty trained, etc...

She might be more willing if somehow her load could be lightened...(my twin girls are now 5.5, but when they were 3 I barely knew which way was up!). It sounds like you are close by...any chance you could offer do make a gluten-free dinner to bring over once a week? Would your son take over dinner once a week? I know I LOVE when I don't have to figure out what I need to make for a meal :)

Wishing you all the best!
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#7 notme!

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Posted 18 April 2012 - 10:37 AM

thanks so much, all! our son tends to go the 'cheaper' route: naturally gluten free food (raw food meat, veggies, etc) and (like me) just subs for pasta and sandwich bread. he is getting more adventurous with his cooking. i was just knocked for a loop when the (regular pediatrician, not GI ped) doc told them gluten-free diet would hurt him. right now they have him on (not gluten-free) 'regular' diet and metamucil and suppositories :( <the saddest of sad faces. his mom, i think, would be on board if that dad-gum doctor didn't say that. no test results yet...

he is doing ok with the peeing (ok, i'm gonna give in and let them pee in the yard) just the #2 he is either constipated or D - you and i know he has absolutely no warning with the D. trying to remember how we potty trained son: daughter reminded me how. "m&m's for everybody if you two older girls can get him to go on the potty!" they spent days in the bathroom with him and got their dang m&m's. nothing like peer pressure with a little sibling rivalry on the side!
  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#8 notme!

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Posted 18 April 2012 - 10:39 AM

oh, and he is CONSTANTLY hungry - i can just have fed him or given him a snack and 5 minutes later he is in the kitchen starving to death. sound familiar :(
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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#9 IrishHeart

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Posted 18 April 2012 - 10:47 AM

No baby or infant or toddler should need metamucil and suppositories.

Talk about compounding a problem!!! :rolleyes:

Please, for the love of mike, have them try a gluten-free diet and some probiotics and get him to drink water.

As Karen points out, trying to potty train a 3 year old when he can't even produce a solid, easy to pass BM is asking a lot.

I would think that having suppositories shoved up there and all the hoopla around getting him to be potty trained while he is straining and in pain is pretty stressful.

It was for me--and I AM potty trained. :blink:
IMHO
  • 1

"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


#10 notme!

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Posted 18 April 2012 - 11:35 AM

i know it, IH, my heart breaks for him. they have taken him to the e.r. because he has been in so much pain from constipation. i give him apple juice cut half n half with water when he is here. he stays with mom half the time, dad half the time, and i watch him most days while they both work. i can adjust his diet and so can dad but if mom is not a believer, it blows the whole effort out of the water. we (dad and i) were feeding him gluten-free and he wouldn't have a b.m. until he went back to mom's and she gave him gluten. then, well, the dam breaks loose..... you know what i mean. ugh, i never thought i would wish for his tests to come back no-question-about-it positive but at least it would give direction to correct his diet. i sure don't want them putting all kinds of useless drugs into him or "diagnosing" him with ADHD or the like once he starts school....
  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#11 mamaupupup

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Posted 18 April 2012 - 11:52 AM

I have twin 5.5 year old girls--both with Celiac. They each have their own set of different symptoms. One of the two girls eats NONSTOP! And, at 5.5 she weighs a whopping 34 pounds with her clothes and shoes on! Yes, that sounds familiar. I spend so much time prepping snacks, making meals, etc...

I'm so sorry to hear that the Mom isn't on board. If she knew all the horrible things can happen to Celiacs when they don't follow the medically necessary diet! Maybe some tough love here? "Do you want him to possibly get x, y, z???!!!" Or, my favorite, "Celiacs have twice the mortality rate at ANY age if they are not on a gluten-free diet. Do you want him to be twice as likely to die as kid x in his preschool class???!!!"

Sometimes the tough love gets through...she may cry and she may be angry for a while...but...better an angry daughter in law than a sick grandson, I think!

Thinking of you, super-grandma!!!
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#12 IrishHeart

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Posted 18 April 2012 - 12:01 PM

You are in a tough spot, hon.

You balance being a hands-on Gramma and trying not to alienate DIL.

Sorry. :(

I guess the only thing you and your son can do is EXPLAIN in detail that your DX and his AI disease and obvious gluten issues are hereditary and that a wee one should not have these issues--- unless he, too has a gluten issue.

I am not saying I hope he has celiac disease, not at all---but I am wishing he had a more well-informed GI doctor--- because this sure isn't working out at all.

It's a fine line to walk, getting her to see all this, I know.

We had a similar issue in our family and it did not go well at all. Some parents cannot see what is right in front of them and they are unable or unwilling to make a simple change in a child's diet to see if it would help.(meanwhile, this child I love deeply is unnecessarily anxious and up half the night bouncing off walls and easily irritable. For what? because Mom won't take out one food protein? argh! Makes my heart sick.)

I have my fingers crossed for 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


#13 notme!

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Posted 18 April 2012 - 05:17 PM

well, the test is negative. which i told them is so common :( she won't even try a gluten challenge, which would at least show gluten intolerance. my other 3 yr old grandson (who lives here w/his brother and mom <husband is in the military) has NO issues it's so evident the differences. so, no, i DO NOT think EVERYBODY has a problem with gluten. which is what i got to hear tonight :( yayyy. well, i'm sure this will continue. the kid has issues. thanks, everybody -

(yes! i am the food dispenser here lolz - the boys are pretty close in age - i know what you mean!!)
  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#14 mamaupupup

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Posted 18 April 2012 - 06:03 PM

I'm thinking of you all! That must be so difficult! Try to get your son to at least get your grandson's blood tested annually...one of my girls had a rising TTG (just shy of a "positive"), which caught my attention and the attention of our awesome pediatric GI.

Also, hopefully your son/dil can find a ped GI to help the little guy with his tummy issues--a regular pediatrician may not be the right choice. (In our case, it took me taking the kids to an allergist to get the Celiac Panel run...plus changing pediatricians...then a local ped GI...then a world class researcher at Children's Hospital in LA).

If it helps at all, I was pretty clear that one child had Celiac before the rest of the world would agree with me...it took me close 2.5-3 years to go from suspicion to confirmation and a gluten-free house! It literally took 50% of my kids' lifetime to get it done!

It may be a long road...you seem like the absolute right person to be in your grandson's life!

Oh and a p.s.: I suspected one of my twins was Celiac and didn't suspect the other...in our first round of blood testing my UNsuspected daughter had a clear positive on bloodwork and our prime suspect didn't. It may be worth testing both kids every year!!!

Hang in there!
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#15 IrishHeart

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Posted 19 April 2012 - 04:53 AM

well, the test is negative. which i told them is so common :( she won't even try a gluten challenge, which would at least show gluten intolerance.


Sorry to hear this. Maybe you can slip him some probiotics and keep him gluten-free when he is with you. I pray he gets some relief.

When someone who obviously has a gluten issue snarks at me "not everyone has gluten issues!", it takes everything in my power to hold my tongue and not say "maybe not, but honey, YOU surely do!"

Know in your heart that you did everything you could to help him.

Your son may be the only one who can change her mind. And Mamaupupup is right--have him tested annually!
  • 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



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