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Sagesmama

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Sagesmama Rookie
Sagesmama
Posted

My son Sage was just diagnosed with Celiac... we're still trying to take it all in and have yet to met with teh dietician. My husband and I were also tested and we have yet to receive results.

It's so overwhelming... it's difficult to absorb. One trip to the health food store drained our weekly food budget and almost sent me into a panic thinking, "how are we going to DO this" but then I found this forum... and yes, it will be so hard but maybe with the support that I see others getting here- we can get that too and it won't be so difficult.

So- just introducing myself for now. My name is Kat, my husband is Alex and our kids are Sage (5 1/2 and Iris (7 months) and we live in MA about 40 minutes south of Boston.

Sage is being seen at Mass General Hospital for kids in Boston. Our next appointment is on March 1.

Hope to get to know you more! :)

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Rusla Enthusiast
Rusla
Posted

Hi Sage, welcome to the board. Actually there is lots of things you can still eat as long as you don't do prepackaged food and tons of breads. It doesn't have to be expensive but it will be a lot healthier for everyone and easier if you are all gluten-free. It will be tougher on your son in regards to school and such. But there is tons of support on here and good recipes and advice. We have all walked and are all walking the same road.

floridanative Community Regular
floridanative
Posted

Hi Kat and welcome! There is a support group website that is for parents of kids with Celiac disease. I never visited it as I don't have kids but I assume they would have a ton of helpful info for you.

www.celiackids.com

You can do this it just takes some effort to learn how and a positive attitude. This board will be invaluable to you. Also, look for a support group in your area - I have three here and they saved me emotionally. Good luck!!

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Sagesmama! Welcome to the board. I think that you will find that there are some VERY knowledgeable, kind, caring people here. That has been my experience, at least. :) I agree that it is a lot to take in, but I hope that you get a dietician that was as good as my experience yesterday. She made things a LOT easier. I wish you good luck, and hope that Sage does really well. Vydorscope would probably be a really good person to contact . . . . I think you're both in the same boat! Take care and welcome . . . .Lynne

KayJay Enthusiast
KayJay
Posted

Hello and welcome! I think you will find a lot of your answers here! It is really overwhelming at first but it gets easier as the time goes. Just curious how is your 7 month old doing? Have you started any solids with her yet? I have a 6 month old that we are watching closely. I have celiac in our family.

Welcome and I hope that Sage starts to feel better real soon!

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Kat!

Welcome to our group! There's a bunch of really knowledgeable and supportive people here who are always willing to help out - we've all been there at the beginning where it is just sooo overwhelming but trust me, there is a light at the end of the tunnel and you will get through this. Once you see the improvements in your son (I love the name Sage!!!), it will make it sooo worth it!!! It will get to the point where it will be second nature to you and you will become an expert at reading labels.

One resource I find absolutely invaluable is the delphi gluten free list. It is a list that is updated regularly, and it is also in convenient categories, which saves alot of time when you are stuck in the middle of an aisle trying to read a 70 page list trying to find something!!!

Go to www.delphiforums.com and then on the left hand side, click on the "Health & Wellness" category. Once there, the first or second forum is the Celiac Support Group, click on that. (You will have to sign in at some point, but it is free and soooo worth it!). Once there, scroll down to where you see "Gluten Free Products List" and click on that. You will see it come up in all the different categories. It is an amazing list. You can also download it so you can carry it around in a binder when you shop.

Again, welcome!

Karen

elfkin Contributor
elfkin
Posted

Welcome Kat and we are glad you are here! My celiac son (age 2) is on my lap while I type this, so it will be short! My son was diagnosed around 15 months of age. My six year old daughter just started getting sick in Nov./Dec. '05. She is gluten free now too. My husband has been ill for several years, and now the verdict seems to be a gluten problem as well as other stuff (possibly from going so long undiagnosed). So I am the only "gluten-eater" in the family - I don't eat it at home though (and less and less anywhere else either!). We are a gluten free/peanut free zone! It is very overwhelming at first, but soon it will get MUCH easier! This board is great for sharing info.

Welcome!

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taweavmo3 Enthusiast
taweavmo3
Posted

Hi there! Welcome to the board, this has been my lifeline and saving grace for the past year. The diet is so completely overwhleming at first, and you will probably have a few meltdowns, but in time it becomes second nature. There are SO many well seasoned celiacs on this site, that you can get answers to nearly every question you have.

I feel like I have it down pretty well now, and stick to products I know are safe. We don't buy a whole lot of specialty foods besides Tinkyada pasta, Kinnikinnick bread and pizza shells that we use sparingly, and Glutino pretzels. OH, I also just found Authentic Foods gluten-free flour blend, that worked perfectly in one of my old cobbler recipes (with 1/4tsp xanthum gum added). I can't tell you how thrilling that was for me, we were all watching the oven with our fingers crossed. We had severely missed peach cobbler! But really, everything else comes from the regular grocery store. You just have to learn what brands are safe, then you are in the homestretch.

Good luck to you, and hope to see you around more often! BTW, I love your kids names. I'm 5 months preggo right now, so I take notice of every name I see, in hopes of finding one for this bub! Mae has been a favorite of mine for a long time, and Iris is a name I never would have thought of, but they go beautifully together! Take care, and I hope you see some major changes in your son soon, it's what makes all the struggle totally worth it.

Guest nini
Guest nini
Posted

Hi and welcome, my daughter is a soon to be six year old, she's been gluten free since 3 1/2, and she's a happy well adjusted kid, I think the way kids handle it depends on our attitudes, and since I try to look at this as "what yummy foods CAN we have?" instead of "oh my gosh we can't have ANYTHING" she looks at it that way too... We get excited whenever we find something yummy that is NATURALLY gluten free, and we try to limit our "specialty gluten-free products" because we are on a very tight budget.

I have a newbie survival kit with a lot of helpful files in it if you are interested... it's a zip file, so you will need a unzip program to open it, but if you want it, e-mail me at nisla@comcast.net and in the subject line put "request newbie survival kit" and I'll be happy to send it to you!

paulasimone Rookie
paulasimone
Posted

sagesmama said:

It's so overwhelming... it's difficult to absorb.

I found myself saying these very words *today* to one of my colleagues about my own celiac disease. I laughed out loud when i thought about it - yes it *is* difficult to absorb!

you know, like, *nutrients*.

:lol:

Welcome and good luck!

Dietcokehead Rookie
Dietcokehead
Posted

Welcome! I have an almost 5 year old son too. He was diagnosed at age 3. I spent a lot of time stressing about how we were going to make this work, what was I going to feed him, etc. Well now it's second nature most of the time and no big deal. :D You will be ok and your son will be so much healthier once he has been gluten-free for a while!

Do you have a local ROCK group in your town? (Raising Our Celiac Kids)? Also, make sure you check out Danna Korns books if you havent already.

Sagesmama Rookie
Sagesmama
Posted
  • Author

oh wow- thanks to all for the warm welcome :)

Paulasimone- you're a punny girl... :rolleyes:

Dietcokehead- no R.O.C.K. group but there is another kind of support group close by, I just need to get in touch

nini- I'll email you- thank you... and thanks for reminding me to focus on the positive

taweavmo3- are you having a girl? congrats to you!

Canadian Karen and floridanative- thanks for those links... I'm printing out that massive list as I type this B)

KayJay- Iris seems to be doing great... she has brown rice baby cereal though but has recently started on Cheerios which she just adores- but with no belly problems.

And to everyone else- thank you so much... I really appreciate the support.

We've decided as a family to go completely gluten-free in our home.

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