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Member Since 10 Mar 2012
Offline Last Active Jan 15 2015 09:14 AM

#850422 Really Torn About The Testing Process For Son - Please Weigh In!

Posted by on 25 January 2013 - 08:55 PM

You are a great Mom!!! You are asking great, smart, thoughtful questions. I had to go around LOTS of doctors to get my kids tested and eventually got in to see Dr. Michelle Pietzak at Children's Hospital Los Angeles (a huge drive for us and so worth it). Ultimately, our twins were diagnosed with Celiac (as I had suspected) and Dr. Pietzak insisted my husband and I get tested (turns out I am a classic Celiac case--I had lost total sense of what was normal for me...).

My BIGGEST message: go immediately to the very best CELIAC specialist you can find. This is such a tricky disease and even the experts are very humble about what they know of the disease (in a very good, inquisitive way).

My next big message is this: part of our jobs as parents is to teach our children how to take care of themselves health-wise. We have to sometimes endure uncomfortable things (bloodwork) in order to make good, healthy decisions for our bodies. We have one daughter who was a screaming nightmare to draw blood from (it took me and four other adults to do her second blood draw a year ago). Now she just sits on my lap and is brave. I trust both of my six year old girls to make healthy decisions independently now, even when I'm not around--not that the last 12 months were easy by any stretch of the imagination.

A couple of points I echo:
- Make a thorough list of all bloodtests to be drawn and get it done at once
- Yes, do the blood genetic testing

A gigantic reason to intervene (test) is that if you catch Celiac when the kids are young, their likelihood of developing an additional auto-immune disease. This is from the Celiac Disease Foundation facebook post this week:

Early diagnosis is beneficial! "Children who are diagnosed
between the ages of 4 and 12 have a 17% risk [of developing an additional autoimmune disorder]; from 12-20 years of age the risk goes up to 27% and an individual diagnosed above the age of 20 has a 34% chance of developing another autoimmune disorder." - The University of Chicago Celiac Disease Center

You and I, diagnosed in our 40s have an even higher likelihood of developing other diseases (because our systems have been taxed for so long).

Go get 'em! You're a great Mom and it's going to take lots of energy and hard work--and you're doing the right thing!!!
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#841987 Celiac & Non Celiac Kids... How To Keep Things Fair?

Posted by on 09 December 2012 - 10:55 PM

This is such a great question! We have fraternal twin girls, both diagnosed with Celiac (along with me) so we have a gluten free home. We have a TON of "fairness" issues daily, including some food-based (for instance one was lactose intolerant for a few months, now the we have likely discovered a fructose issue for the other).

My basic approach puts my sanity above what is fair, frankly. I think all of us on this forum have so much on our "plates" that it is 110% ok for you to do what is best/easiest/most sane for you, as long as it preserves the health of your family. :)

Here's what works for us:
- I attempt within reason to do what is perceived as fair
- I make one dinner, if kids don't want to eat what I've made they can have a banana or yogurt (which they have to fetch for themselves)
- For going out (like to a bbq) I make meals in the Ziploc brand tupperware type containers that have three compartments. I make some kid-specific accomodations (one likes walnuts, the other likes peanuts), but those are minor.
- If one kid needs lactose free ice cream, that's what we all eat
- If one kid can't have gum because of the sweeteners, none of us have gum and I find a suitable substitute for all
- We say lots of things like, "Oh well, it's no biggie to not have x, we get to eat y" and praise the girls a ton when they proactively adopt those words.
- Another helpful phrase we have found is, "Things don't have to be perfect in order to be wonderful."
- Now that the girls spend more time separately (like being spoiled at grandma's house one at a time), I often get "she got to have french toast and I didn't" type of complaint. I simply say, "I can see how that must feel upsetting. I'll do my best to make it up to you soon" and then try to follow through or make a plan. One of my girls is a total problem solver (she can think of dozens of ways of solving a single problem) so she often has suggestions that really work.

You are a great Mom! Do what keeps you sane! :)
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#837901 My 6 Year Old Just Diagnosed - Question About Reflexes

Posted by on 20 November 2012 - 01:14 PM

Hang in there! Previous posters alerted you to some really good additional information--especially the thyroid stuff. From what we are learning, it takes 6-12+ months for kiddos' bellies to heal and 12-36 months for adults to heal.

In our family, we had one 6 yr old who had a REALLY difficult first three months off of gluten. I don't really understand why, it just was very hard on her--lots and lots of belly aches--and some leg pain and then it all evaporated. Our other twin went from intense muscle/joint/bone aches with itching 2-3 x a week to about 1x a month. We happened to be at our (rockstar) cardiologist who asked how the girls are doing...I told him about the remaining aches and itching. He said, "Reduce her lectin intake and see how she does." (I had no idea what lectins even were). We've cut out tomato and bell peppers (of which we ate a lot of) and she has been 100% since.

The trickiest part of Celiac and all of this is that every individual is different. This forum is so excellent because so many people openly share their experiences. Take what works for you and your family! Wishing you as smooth a path as possible to full returned health for you and your kiddos!
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#823266 SoCal Ped GI's

Posted by on 12 September 2012 - 09:43 PM

:) Yay! Making progress! So excited for you all! :) The CC thoughts never end :) Thinking of you all!
P.S. Since you are in So Cal, try to go to the Celiac Disease Foundation conference next April or May -ish. It was EXCELLENT for us! We will be there again next year!
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#804529 Intro With Lots Of Mixed Emotions

Posted by on 18 June 2012 - 07:44 PM

Hi there,

I am almost in tears reading your story. This hits really close to home--and I hope I don't make you cry. I hope I do give you hope for you, your own kiddos and all the lives you will touch by helping others recognize the symptoms of Celiac!

My twin five year old girls were diagnosed with Celiac in March. My GI called me today with my endoscopy results: I have Celiac Disease too. And, since I'm 45 we also did a colonoscopy while I was under. He told me today that the polyp he removed was precancerous and was an aggressive type. I feel like my little girls saved my life.

I'm thinking of you. I'm sure your Mom is so proud of you and thankful that you are figuring out this complex health puzzle.

Thinking of you!
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#788153 How To Approach Parents

Posted by on 16 April 2012 - 01:08 PM

My kids have Celiac and I, (not my husband) am the genetic carrier. When I told my Mom she said, "I don't have to get tested do I?" Note: reading between the lines for her means "I'm in my 70's, so what's the point?"

I asked our pediatric GI "What is the point for my Mom?" and she said, "I've seen hunched over elderly folks sit straight up and have a long, healthier life being off gluten." Plus, my Mom sometimes has to run for the bathroom after eating misc. foods...

I'll be on my own crusade to have her get tested in the next month: you are not alone!

One approach for your Dad may be to win him over via his stomach! "The way to a man's heart is through his stomach" tactic. Make him or bring him something incredibly deliciously gluten-free. When he compliments you/it, just say, "Yeah, isn't it great? It's gluten free!" and then change the subject. Just keep doing that over and over. He'll finally say something like, "What, are you bringing me some of that gluten free stuff again?" And you smile and say, "Yep, don't you love it?!!! See, when you get tested and go gluten free, you'll be able to eat delicious things AND have even better health!"

Keep us posted!!!
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#780027 Going To The Cinema

Posted by on 11 March 2012 - 12:11 PM

:) yay movies! My newest favorite gluten-free munchy: Bangkock Sweet Chile Rice Chips by Snapdragon. Our kids love Pirates Booty (but I think it has corn, so double check the ingredients list). For a more healthy choice I love jicama slices. Jicama can be sweet and crunchy and has lots of water in it! Jicama, like carrot, is a root, so I'm not sure your throat will like it.
Instead of cola/soda could you find a more "natural" soda like a ginger ale?

Have fun at the movies!
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