Brand New Member Shock

[Jules1018]

Hi all,

Well I am new here and found you all through the book the dietician gave us today. Celiac runs in my family but until today, my children were not one of my family members diagnosed. My daughter Katie had a test yesterday and the dc diagnosed her with celiac today.

Katie is 3 and is starting preschool Tuesday. We have 3 children, she is the middle one, (more than likely our oldest has it also, and possibly the youngest). The doctor wants our oldest tested again and our youngest tested for the first time, and then about every 3 years after.

I am looking for support for our children and am realing from everything I have read and the study I found tonight about cancer. It said that 3to1 (3.1) of the people with celiac will get NHL(non hogens lymphoma. That was scary for us. Also I went through not eating what others ate wen I was little and I am sadden that is going to be the case with atleast 1 of our children.

Info is great and I would really like to hear experience on this.

[blueeyedmanda]

Hi and Welcome to the board

This is going to be a great place to get support and swap recipes and other things you like/dislike about different things. We have a lot of parents on this site and they have some of the best ideas I have ever heard for keeping their celiac children gluten free while at school. All things from food, surprise snacks, to arts supplies and other things. With your daughter going into preschool those might really help you out.

Things will probably feel real overwhelming for you at first but in time once you get into a routine and everything falls into place it will be a breeze.

It seems like you are eager to learn and help your children and this alone is going to make this transition so much easier.

Good Luck!!

[Guest j_mommy]

Welcome!!!!

Have you guys looked into joining a local support group? My Dr gave me the names when I was diagnosed. I would also look into your local ROCK group!

Here are some books I'd recommend...

Living Gluten free for Dummies by Dana Korn(any of her books would be great for you guys as she deals alot with childern)

Celiac Disease: A hidden Epidemic by Dr. Peter Green

Have you been tested/Dx'd?

[Jules1018]

thankyou guys i am going to need lots of questions answered periodically and support is welcome.

My Mom and Grandma say I that was diagnsed as a baby but when I was about 9-12 I started eating regular food and have been ever since. More than likely I do have it though.

Right now I'm just concerned with helping Katie feel tummy-ache free all the time, and to see if the other 2 do indeed have it.. I have a lot of questions about what we need to advoid other other than typical foods, such as is there certain antibiotics that I should say that she cant have if she gets sick or are there over the counter meds she cant have. Also you also ave to avoid products such as shampoo with gluten too right? Also she sometimes has knee swelling and her knees hurt her at times. The idea that she had juvenile rhuematoid arthritis came up this summer but I am wondering if the pain is just from the celiac spru.

Thankyou this means alot

[happygirl]

If you were properly diagnosed with it as a child, you still have it. It never goes away. It is a lifelong autoimmune condition. Symptoms might wax and wane, but for a true Celiac, the intestinal damage is still occurring. Did you have a biopsy diagnosis?

In terms of the rates of Celiac-related illnesses, including cancers, fertility, etc. Many of the risks that are out there are for people who are undiagnosed/not on the diet. Once you go on the diet, and your body heals, your risks lessen greatly.

There are so many great gluten-free products out there. We have many parents of happily thriving children on this board!!

There is a lot of information out there; its hard to know what the context of many of the reports are though.

Check out the book in my signature....it is an invaluable resource.

Also, this website has a lot of great information. www.celiacdiseasecenter.columbia.edu

"10. Screening for malignancies

Patients with celiac disease are at an increased risk for the development of some specific types of malignancies. A gluten-free diet is considered protective. After diagnosis and commencement of the gluten-free diet, the increased rates in most studies fall to that of the general population.

There are currently no recommended guidelines for screening individuals with celiac disease for malignancies. It would seem prudent for patients to at least have an annual thorough physical examination and to have the stool examined for occult blood. "

Also, "Prompt diagnosis and treatment with a lifelong gluten-free diet mitigates and even reverses the gastrointestinal and systemic effects of celiac disease, and reduces the risks of subsequent development of malignancy."

[Jules1018]

I honestly know it doesnt go away I just have coose to believe I dont have it

My mom has it as does my grandma (she is actually on tpn and hasnt ate for years) My nephew/cousin has it but I never thought my kiddo would get it and for that reason didnt really pay ttention as my mom didnt recognize her celiac till recently.

I'm glad it was caught early and based on the symptoms my other daughter has had off and on we are pretty sure that she might have it too

I appreciate your all input and we are also trying to join ROCK group

[dandelionmom]

I can totally relate to the shock! My 3 year old daughter was recently diagnosed and is also about to start preschool.

She really likes the book "Eating Gluten-free With Emily."

We're still figuring this all out. My daughter is feeling so much better since we started the gluten-free diet. She's almost like a different child. The best thing we did was find gluten-free alternatives for all of her favorite foods (Ians Chicken Nuggets, Glutino Pretzels, and Envirokids Panda Puffs cereal).

Everyone here is so incredibly helpful and supportive!

[ryebaby0]

You are actually fortunate to have so many family members already familiar with it -- that could make things easier. The shock will wear off! But it's normal to feel overwhelmed. Anyway, my son was diagnosed with rheumatoid arthritis prior to a proper diagnosis of celiac; his ankles and hands were the most affected joints. Once he was gluten free, all his symptoms of RA disappeared.

Also, the non-hodgkin's rates for celiacs are usually referring to UNdiagnosed or UNcompliant (still in denial and eating gluten) people. And even when they aren't, "more likely" in medical terms still tends ot reflect a very small rate of disease -- in short, I wouldn't get reallly worried about that.

There is a "newbie kit" someone here put together -- you could search for it, or maybe someone else remembers which thread it's on?

joanna

[Nikki'smom]

Welcome,

I am still very new here too. My daughter hasn't been officaly diagnosed yet but I have been pretty much told by all the drs and nurses that can't imagine her not being diagnosed once her scope is done( wed) with how high her blood levals are.

I completely understand the over whelming feeling! I still get it at times but the shock is wearing off and now I am focused on what needs to be done.

Thankfully my sister in law is wonderful! She actually took it upon herself to order my daughter 2 boxes full of food she would like so when we get hiome from the scope we have food she can eat right away! She got tons of frozen food and dried food as well as ordering us a gorcery store book about gluten free and a dinning out guide. It was very touching to get that stuff in the mail and DD was so excited because she gets her own specail food!

Welcome to this journey we can all take together

Joanna, I would love to see that newbie kit thread do you know how far back it is or the exact name of it?

[leelee20]

I'm 18 and I LOVE envirokids peanutbutter panda puffs... I was diagnosed at 1 and a half, there wasnt as much gluten free stuff around then (early 90's), I think, or at least the selection seems to have gotten much more palatable. People actually know what celiac is now, too. Best of luck!

[Kibbie]

This is a great place to get information I too highly recommend the book Gluten free Living for Dummies! Its a quick read and I felt like I understood what was going on with my daughter and had control of it!

MY daughter was only 18 months old when diagnosed so she will never remember a time when she wasn't gluten free (for that I'm thankful" but she will have a lifetime of "eating different". At first I was saddened by this but once the shock wore off I realized that on my street alone we had:

3 vegetarian families, 1 vegan family, 1 kosher family, and 2 families who have sever allergies (one to peanut and another to dairy and eggs) anyhow the way I figgure EVERYONE these days is eating differently from everyone else so she will be "normal"

Anyhow a lot of the normal stuff is okay for them to eat: Otter pops have been a great hit on my street this year

I promise in just a short time this wont feel so bad!

[lovegrov]

"It said that 3to1 (3.1) of the people with celiac will get NHL(non hogens lymphoma. That was scary for us. Also I went through not eating what others ate wen I was little and I am sadden that is going to be the case with atleast 1 of our children."

I'm not sure where you found this but it absolutely is not true. Our chances of NHL increase, but overall are still pretty miniscule.

richard

[ShayBraMom]

Welcome, I'm glad you found your way here! I"m sure this is what you need here, everybody iss o nice and supportive! And besides that, maybe you want to check enteroLab, you can get Stooltest that are so sensitive that they'll pick up often long before bloodwork or Biopsy shows results. Check it out!

Open Original Shared Link

Good luck!

[ryebaby0]

Okay, the newbie survival kit was put together by nini, and the link is on her homepage (scroll down to the very bottom...)

Open Original Shared Link

Also, remember that as human beings, people have their own tolerances, thresholds, opinions, and viewpoints on many celiac issues. (enterolab's credibility being one, McDonald's fries being another, advocacy, etc..... you get my point). When in doubt, do your OWN research and make your own decision. Also know as the "your mileage may vary" rule!

joanna

[buffettbride]

Welcome!

Celiac is overwhelming at first, and frustrating at times. There really is a trick to it though, and I've found the support found here to be absolutely wonderful, not to mention the endless gluten-free resources. I've only been doing this for about 5 months with my DD who was dxd in May. It is WONDERFUL to get rid of the tummy aches and see them feeling well again.

I try not to worry about the cancer statistics too much, but as a parent it is normal to be concerned about those things.

Really the best thing you can do is ensure your kiddos live the best gluten-free lifestyle they can and focus on the positives of the opportunity to eat a healthy diet their whole lives rather than the negatives that can come from not eating well as a Celiac.

It's AMAZING what children can overcome. I think we will see great strides in the gluten-free lifestyle in their lifetimes and that what now seems so difficult and complicated and "rare" is common and mainstream and EASY in their future.

Well, a mom can hope anyway!

-Mallory