Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

ptkds

Just Diagnosed And In Shock!

Recommended Posts

My dd was tested for celiac disease a few weeks ago and it was positive. So I got tested 2 weeks ago. I was told that the tests were negative, but the nurse called today. She said they got more results back and they are positive for celiac disease.

I am in shock. I have been research celiac disease for a while now, and i know what I have to do to help me and my kids feel better. But just knowing for sure that we have it is such a horrible feeling. I am scared and sad and I feel bad for passing this on to my kids. I suspect that 3 out of 4 of my kids have it. I don't want to put them through blood tests, so we will just do the diet and see how they do. I just feel horrible about this and I hardly know where to begin. My kitchen is FULL of food that contain gluten. I don't know whether to throw it out or just finish what we have and not buy any more. I would rather make our bread than buy it, but I don't have a good enough mixer to make dough, and i won't have the money to buy one until we get our tax return.

Sorry, but I am rambling. I told you I was in shock! I am very confused right now.

Thanks for listening!!

ptkds


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Sorry, it is a shock! Throw away the gluten foods, or give them to a neighbor. Don't eat them! You need to start healing. If you need one last binge, let today be it ...


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Yes, I gave all my gluten food to my MIL (including a TON of food storage!). It's tough, but when you decide to change, you gotta purge the whole kitchen!

This diet is frustrating, but it's doable! I know I was very upset when I found out what I had, but my husband reminded me that it was also a blessing to find out because now I know how to control my illness, and I can make myself well again.

You should PM GFBetsy...she also is a mother of 4 girls, one of whom is celiac, and she cooks gluten-free for everyone.

Do you have a hand mixer? That's all I have, and it works okay. I'm hoping to get a good powerful mixer for christmas, but it does the job. gluten-free bread dough is usually less tough than regular bread dough.

There's a lot of good gluten-free food out there! Browse through the recipe section here for meal ideas...we're all happy to help you any way we can! You can do it! Here's to getting better!

Good luck!!!


Sweetfudge

Born and raised in Portland, OR; Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, crucifers, popcorn, most red meat, coconut milk :(

Started eating a Paleo diet Spring 2011. Love it!

The grass is always greener where you water it.

Share this post


Link to post
Share on other sites

Welcome. :)

It gets easier and the great thing is that your health and your children's health will improve. Your children will not be faced with the consequences of undiagnosed Celiac. Please congratulate yourself on finding out, many people go for far too many years and suffer for it. Do not hold yourself responsible, you inherited this, it has been passed down for generations and there is no blame to be found in that. Do you blame your mother and father?


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

Share this post


Link to post
Share on other sites
Guest cassidy

Your family is lucky that you figured out what is wrong. It is shocking at first, and it took me a while to comprehend everything and come to terms with it. It will be easier if you all go gluten-free because there won't be gluten food everywhere to tempt or cc things.

My mother felt guilty as well, but it isn't your fault. We all are who we are because of our genes, some of it is good and some not so good, but that is how it works. At least this is treatable and you don't even have to take medicine. Some people inherit life-threatening diseases that really decrease their quality of life. Your kids will be much healthier since you figured this out now rather when they are your age and they are lucky to have a mom willing to take the time and effort to figure all this out. Some people post about how their parents don't take the diet seriously and get them sick all the time.

Take a deep breath and realize it takes time - you can't be perfectly gluten-free in a day. You'll figure it all out and this is a great place for advice. It really does get easier.

Share this post


Link to post
Share on other sites
My dd was tested for celiac disease a few weeks ago and it was positive. So I got tested 2 weeks ago. I was told that the tests were negative, but the nurse called today. She said they got more results back and they are positive for celiac disease.

I am in shock. I have been research celiac disease for a while now, and i know what I have to do to help me and my kids feel better. But just knowing for sure that we have it is such a horrible feeling. I am scared and sad and I feel bad for passing this on to my kids. I suspect that 3 out of 4 of my kids have it. I don't want to put them through blood tests, so we will just do the diet and see how they do. I just feel horrible about this and I hardly know where to begin. My kitchen is FULL of food that contain gluten. I don't know whether to throw it out or just finish what we have and not buy any more. I would rather make our bread than buy it, but I don't have a good enough mixer to make dough, and i won't have the money to buy one until we get our tax return.

Sorry, but I am rambling. I told you I was in shock! I am very confused right now.

Thanks for listening!!

ptkds

Remember, you didn't *choose* to pass it on to your kids-- that's just random chance and genetics.

Put all of your gluten stuff on the dining room table and invite your friends over to take whatever they want. Toss the rest, or donate it if it's unopened. Don't eat it. It will take long enough to "de-gluten," so you might as well start as soon as you can.

I can't really imagine what you're feeling right now... If it helps, I would like to point out that you are doing your kids a huge favor by putting them on a gluten-free diet. Maybe they will recover faster because they are younger. And I imagine that goes a long way toward preventing the many horrible complications that can happen from the cumulative effect of gluten and the resulting damage.

I think you're doing the right thing.

If money is tight, I think it's easier/cheaper to start out with unprepared ingredients (veggies, fruits, fish, cuts of meat, whatever). I didn't even try gluten-free adaptations for months because they were so expensive. On the bright side, after a year without chocolate chip cookies, my first gluten-free attempt tasted great! (They've gotten better since then...)

Good luck and hang in there. Think of how happy and healthy your family will be!

(insert cheerleading icon here)


no wheat, no corn since 2002 (except the occasional accidental exposure)

Share this post


Link to post
Share on other sites

I'm sorry about your results but I applaud your decision just to go gluten free with the kids and not put them through testing. I'd really like the words 'Celiac Sprue' not to be in my medical files now but that ship has sailed. You'll find all the help you need on the board. Don't be afraid to ask anything.....there's nothing that's off limits to this group.


Dx'd with anemia - March 2005

Positive blood tests - Sept. 2005

Positive biopsy - Jan. 2006

Gluten free since 1-23-06

Share this post


Link to post
Share on other sites

just wanted to add that i'm thinking about you! it is very sad at first and quite a shock, so grieve as long as you need to. and don't feel guilty, you had no idea that you had it and like the other responders have said, now your kids know early on that they might have it and can prevent further damage. my mom felt guilty, too, but it's not her fault, either! :) after a while, you will be able to feel more positive about it. take care.


diagnosed 8/05 through positive bloodwork & biopsy

gluten-free since then!

"Those who are willing to be vulnerable move among mysteries." Theodore Roethke

Share this post


Link to post
Share on other sites
Sorry, it is a shock! Throw away the gluten foods, or give them to a neighbor. Don't eat them! You need to start healing. If you need one last binge, let today be it ...

Please don't forget your local food pantry. If you family cannot enjoy, there are always others in need.

I also would like to add....On many of your food products there usually is a website that you can write and check and see if there is any hidden gluten. I have found that most company respond within a few days and are quite helpful. Donate the obvious, but call on the rest. (it's good practice as you may be doing this alot in the future.) :rolleyes:

Best wishes.

Lisa


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites

ptkds -

I've got a great bread recipe that you can actually make by hand. (My aunts made 5 or 6 batches by hand IN A ROW! I think their arms probably hurt later, but it proves that it's doable!) I'm pretty sure you could do it with a hand-mixer, too, because it's more like really thick cake batter than normal bread dough.

And, hey! If 3 of your 4 kids have it, I'd suspect that your husband probably carries genes for celiac as well! So blame it on him! :lol::lol::lol:

PM me if you want the bread recipe or any other recipes . . . I love to share, and I make sure that my recipes taste really good . . . I'm not going to feed my daughter something that I won't eat myself!

You will be okay. The shock is perfectly normal. You'll also probably get mad and then depressed (or all three at once) before you are completely okay with things. And even then, you'll have days of frustration and depression. Just the other day I got so overwhelmed at the thought of going to my in-laws for Thanksgiving. We'll be gone for a week, and I just know I'm going to have to pack an extra suitcase full of food so that my daughter will be able to eat for that week. I complained to my husband, sister, and friend, and all of them were encouraging and gave me some great ideas, but I was still upset. And then, the next morning I woke up and it was no big deal again. I think that sometimes we just need to mourn and vent in order to really get a grip on things.

So go ahead and feel sad for a while. But don't feel scared. You are not alone in this, and you will be okay. Everytime you feel overwhelmed, come here and someone will help you through.

Share this post


Link to post
Share on other sites

I know exactly how you feel. My 3 year old was diagnosed in May. I suspect my 21 month old has it but his blood was negative but I know under 2 might not show up yet. I just had my biopsy yesterday and they are fairly sure I have it to, they saw atrophy with just the endoscope and not even the biopsy reults yet. I feel bad for my kids and for myself. I haven't loved my 3 year old's food but he doesn't seem to mind and I feel guilty becaus I know the difference and I won't be as happy as he is with gluten-free food! It is a very emotional time. On one hand I feel lucky that this is the worst thing we have but I also mourn my love for teraki chicken and chicken nuggets from Chick fil a. Sorry to sound whiny, it is just a shock like you said. I have been full force for my son and reassuring him but I don't really believe it for myself! I just hope that I get better at the recipes and finding creative and yummy food. Just know you aren't alone!

Share this post


Link to post
Share on other sites

I have a bread machine and find that it makes wonderful gluten-free bread. I know that there is a lot of satisfaction in making the bread from scratch and doing the whole thing but the bread machine makes it a whole lot easier and you still get the great smell of homemade bread. Plus I make cakes, non yeast breads in my machine. It makes life easier and this bread tastes so much better than the store bought gluten-free bread. I know that there are lots of recipes out there for gluten-free bread but I just use the mix. I have revamped my banana bread and carrot cake recipes making them gluten-free. I have never been a recipe person so I just use the gluten-free pancake mix or gluten-free muffin mix as my flour and just sort of ad lib the rest. Things will get better. I know it was a shock and I only had myself to deal with. I can't imagine how stressful dealing with celiac disease with kids can be. Good luck. There is lots of support on this board.... lots of information but most important, it is a safe place to vent. As for the food in your pantry... your local food shelf probably has lots of need for food right now. For me, the day I found out I was to be gluten-free, I just stopped eating gluten. My daughter was still living with me so we seperated the food and got rid of the gluten food that she didn't like. After 20 years of being very ill, I started feeling better after a month and just never looked back. I know that I have been glutened over the years but never intentionally. Like most of us here, it is easier to start out with a very simple gluten-free diet. It gives your gut time to heal and plus it is not so overwhelming. I didn't start adding "treats" into my diet for about a year. With kids, it will be a challenge but dealing with their illnesses was also a challenge. This is at least a healthy one. Sorry for being so long.... Good luck!


Share this post


Link to post
Share on other sites
I know exactly how you feel. My 3 year old was diagnosed in May. I suspect my 21 month old has it but his blood was negative but I know under 2 might not show up yet. I just had my biopsy yesterday and they are fairly sure I have it to, they saw atrophy with just the endoscope and not even the biopsy reults yet. I feel bad for my kids and for myself. I haven't loved my 3 year old's food but he doesn't seem to mind and I feel guilty becaus I know the difference and I won't be as happy as he is with gluten-free food! It is a very emotional time. On one hand I feel lucky that this is the worst thing we have but I also mourn my love for teraki chicken and chicken nuggets from Chick fil a. Sorry to sound whiny, it is just a shock like you said. I have been full force for my son and reassuring him but I don't really believe it for myself! I just hope that I get better at the recipes and finding creative and yummy food. Just know you aren't alone!

Teriyaki Chicken - easy and YUMMY!

1/2 c. brown sugar

1/2 c. gluten free soy sauce (I use LaChoy, but there are other brands out there)

1 1/2 c. water

4 - 5 chicken breasts, cut in half

Place all ingredients in a pressure cooker. Lock on the lid and put on the weight. Bring up to pressure on high or medium-high heat. After it's up to pressure (the weight hisses and dances), turn the heat down to just below medium-high. Cook for another 20 - 30 minutes. Remove from heat and immediately run the pressure cooker under cold water (until it stops hissing . . . this relieves the pressure inside the pan). Carefully remove the lid. The chicken should be cooked well enough that it can be shredded with forks. Remove chicken from the pan. Return the pan to the heat. Stir together 1 Tbs of cornstarch and 3 Tbs. water, then stir this into the liquid in the pan and bring to a boil. If the sauce doesn't thicken enough, add another batch of water and cornstarch. Serve chicken and thickened teriyaki sauce over rice.

Try it! It's really good! (You could probably make this in a crockpot, too. Just use a little less water. And you'll have to transfer the sauce to a pan in order to thicken it.)

Mmmmm . .. I think we'll have this for dinner tonight!

Share this post


Link to post
Share on other sites
Teriyaki Chicken - easy and YUMMY!

1/2 c. brown sugar

1/2 c. gluten free soy sauce (I use LaChoy, but there are other brands out there)

1 1/2 c. water

4 - 5 chicken breasts, cut in half

Place all ingredients in a pressure cooker. Lock on the lid and put on the weight. Bring up to pressure on high or medium-high heat. After it's up to pressure (the weight hisses and dances), turn the heat down to just below medium-high. Cook for another 20 - 30 minutes. Remove from heat and immediately run the pressure cooker under cold water (until it stops hissing . . . this relieves the pressure inside the pan). Carefully remove the lid. The chicken should be cooked well enough that it can be shredded with forks. Remove chicken from the pan. Return the pan to the heat. Stir together 1 Tbs of cornstarch and 3 Tbs. water, then stir this into the liquid in the pan and bring to a boil. If the sauce doesn't thicken enough, add another batch of water and cornstarch. Serve chicken and thickened teriyaki sauce over rice.

Try it! It's really good! (You could probably make this in a crockpot, too. Just use a little less water. And you'll have to transfer the sauce to a pan in order to thicken it.)

Mmmmm . .. I think we'll have this for dinner tonight!

I am sure glad that I read this (thread?) i have been wanting teriyaki chicken for 3 months and did not know what or how to make it since i couldn't use the what i used to use to thank you so much. i to was shocked im doing better and feel healthier now being gluten free cince Aug 2006. it gets easier. i know i still a newbie but i thought i would put in my 2 cents. Lots to learn and they people on here a wonderful !!

rebecca ;)


Diagnosed Celiac Sprue Disease August, 02, 2006

Blood test, No Biopsy

IgA off the scale 44 now 3

IgG 56

(tTG) IgA 25 now 2

(tTG) IgG 1 now 1

now border line low iron 10

Gluten Free since August, 02, 2007

Diagnosed with Osteoporosis November 2006

As of Jan 2007 all numbers looking good

As of Feb 2007 no more Pork, having Allergic reactions

Lactose Intolerence

Share this post


Link to post
Share on other sites