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One Week Today Our World Changed!

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#1 phillysmom

 
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Posted 22 March 2013 - 04:57 PM

well, one week ago today our little world was rocked! we got the "official" call for the doctor confirming that, yes, my son philip does indeed have celiac!  philly is 12 years old and has down syndrome.......he only eats about 6 different foods........and of course--EVERY FOOD HE EATS HAS GLUTEN!!!!!  it's been quite an emotional week!  i have gotten him to eat rice pasta with meat sauce and he has eaten his first ever egg!..........we had NO idea that he had anything wrong.......no stomach issues, no rash....nothing!  we just went for a routine special olympics physical and our pediatrician suggested a celiac screen since we were already getting blood work for thyroid (my pedi's daughter has down syndrome also and just went wheat free so she thought she would run a test just as a precaution)................i was so stunned!  i've been trying to read up on all of this, but it is so overwhelming!  i welcome any and all suggestions/comments! :)


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#2 mommida

 
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Posted 23 March 2013 - 10:27 AM

Welcome to the board. At first it is information overload. Ask questions here as you go along. All first degree relatives should also be screened.
It is a horrible shock to find out everything you were trying to do right, was wrong. Things can be pretty rough at times. Keep gluten free favorite candy or treats on hand at all times. When you have to say no to food offerings, you offer this safe st ash of favorites. It won't be like your child is being punished when they still have control over choosing from safe food.
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#3 bartfull

 
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Posted 23 March 2013 - 02:21 PM

Check out the "Newbie 101" thread. You will need to learn about cross-contamination. He will need his own toaster if you choose to get him gluten-free bread. (Udi's Whole Grain, Canyon Bakehouse San Juan 7-Grain, or Rudy's are the best. Kinnickinnick is good too. Don't bother trying Ener-G bread. Just about everyone here argrees that it is not even edible.)

 

He will also need his own condiments and butter. A knife that has touched gluten and then gets dipped back into the mayo jar will contaminate the whole jar.

 

You need to cook his food either in stainless steel pans that have been washed WELL, or get him new pans. Cast iron is porous so any gluten from previous use will always be in it. Scratched teflon is out as well as any scratched plastic containers. You can't use your old wooden spoons either. You will need a new strainer for his pasta too. It's almost impossible to clean all of the gluten out of those tiny holes. Lots of folks who live in shared households like to color-code the gluten-free pots, pans, dishes and condiments. If you can keep his food in a seperate cupboard it'll help.

 

It will seem overwhelming at first but you will get used to it and after a while it becomes second nature. Even though he doesn't show gastric symptoms now, after he's been gluten-free for a while he might start getting sick when he's been glutened. That will be a GOOD thing because you will be able to tell if he has been exposed to it. And it really is important that he/you be strict with this diet. Even though he shows no symptoms, he will be doing damage if he eats any gluten at all, and eventually it will lead to all kinds of nasty things. It's good that you caught it early.

 

As Mommida said, read a lot here and feel free to ask as many questions as cross your mind. There are some very knowledgable people here and we ALL have compassion for those who are in our leaky boat. :lol:


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Gemini

 
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Posted 23 March 2013 - 07:48 PM

well, one week ago today our little world was rocked! we got the "official" call for the doctor confirming that, yes, my son philip does indeed have celiac!  philly is 12 years old and has down syndrome.......he only eats about 6 different foods........and of course--EVERY FOOD HE EATS HAS GLUTEN!!!!!  it's been quite an emotional week!  i have gotten him to eat rice pasta with meat sauce and he has eaten his first ever egg!..........we had NO idea that he had anything wrong.......no stomach issues, no rash....nothing!  we just went for a routine special olympics physical and our pediatrician suggested a celiac screen since we were already getting blood work for thyroid (my pedi's daughter has down syndrome also and just went wheat free so she thought she would run a test just as a precaution)................i was so stunned!  i've been trying to read up on all of this, but it is so overwhelming!  i welcome any and all suggestions/comments! :)

 

Children with Down's are at much higher risk of Celiac Disease.  Most doctors do not know this.  There is a young woman who works at my eye doctor's office and her younger brother has Down's.  He did have stomach problems and his doctor kept saying that was something common to Down's Syndrome.....without ever elaborating why.  He probably didn't know of the connection himself.  The poor kid got so bad, he was diagnosed finally by a GI doc who was suspicious because of the Down's.  Now, his sister tells me, he really sticks to the diet because he was afraid to eat for awhile because food made him sick.  He happily enjoys gluten-free pizza at a local restaurant that caters to Celiac's.  He is doing well and has broadened his food tastes so all is good!

 

There is plenty of good gluten-free stuff out there so it will all work out after getting used to it.  Hang in there!


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#5 GottaSki

 
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Posted 23 March 2013 - 09:29 PM

Welcome Phil's Mom and Philly!!!

 

Forgive my tired eyes...what are his 6 foods with gluten?  This is the best starting point...replicate foods he loves.

 

For now....everyone else has given excellent advice...so I'll say goodnight along with a big HUG :)


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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 :)


#6 mommida

 
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Posted 24 March 2013 - 06:53 AM

When it comes to switching to gluten free bread, TOAST or GRILL it.  Even Ener-G bread is edible when it has been grilled or toasted.  (If you have to eat it because of other food intolerances.)


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#7 kb27

 
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Posted 24 March 2013 - 07:49 AM

The transition can be challenging.  We took a different approach and just made the whole kitchen gluten-free.  We scrubbed everything, but kept it all.  It seems to be ok (even with cast iron pots, wooden spoons, etc.).  I think your child's sensitivity to gluten will end up setting up how vigilent you have to be about replacing kitchen items.  We chose to make the kitchen gluten-free because it means I don't have to worry about every single crumb, keeping two jars of jam, etc.  And it means everything is safe for my son to eat.  

 

I would focus on what he CAN eat and not what he can't.  If there are only 6 foods he likes, start with gluten-free alternatives for those.  But he may be willing to eat gluten-free versions of other foods he previously shunned, since they won't make him sick.  My son didn't like bread, sandwiches, or pancakes, until we started making them gluten-free.  And now he loves them.  Hmmmm...  We also relaxed "rules" about cookies and treats and indulged a little in gluten-free treats at the beginning.  It was a way of exploring new foods that were out there rather than mourning the old ones that were lost.  

 

Our celiac diagnosis came out of the blue, too.  I was literally googling "celiac" while on the phone with the doctor discussing his blood test results.  I didn't even know they had tested him for that (my husband took my son into that Dr. appt) much less what it was.  Bit of a shock!


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#8 Cara in Boston

 
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Posted 25 March 2013 - 09:30 AM

We started out just finding substitute foods that tasted like his old favorites.  Now, he is open to trying new things and he is the best eater in the house.  The only other kid in his entire school who has celiac is a little girl with Down's.  They've been in the same class since Kindergarten (now in second grade) and they really look after each other - making sure there are safe treats whenever there is a class activity of birthday celebration.  They have a special bond.

 

Here's what worked for us:

 

Sandwich bread:  Udi's

Pizza Crust:  Bob's Mix or Schar premade (the udi's crusts were too sweet for us)

Bagels:  Udi's

bagel chips:  Glutino

goldfish:  Schar Cheese Bits

wheat thins:  Glutino Sea Salt Crackers

 

When in doubt, just spread some Nutella on it and it will taste great.

 

Best of luck to you -

 

Cara


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