6 Weeks Post Diagnosis And Reality Sets In......

[Sierra's Mommy]

Hello:

I'm not sure which stage of mourning we're in....the anger has been spent, we can no longer deny that my daughter has Celiac--but we're not quite at acceptance yet. Is there a pity stage? 'Cause, optimist that I am, things have been a little tough for both my daughter and me. I'm tired and feeling overwhelmed by the cooking, grocery store buying learning curve, and she is struggling a little with depression as she discovers on a daily basis one more favorite she cannot have---ever. That's the tough part...this isn't a temporary thing, something we need to just push through and we'll come out the other side. Forever seems like....well, forever. Today, she told me she is going to cheat when she is 100--or maybe when she is 20, and I can't see her. (She is 6 and 1/2)

I know it's only food--and I most assuredly know that things could be so much worse and there are parents out there who would gladly change places because the health challenges they're facing are life threatening. Having said that, it is such an awakening to me how much food plays into our social fabric....we bond over food, we use meals as a social backdrop, etc. And when I think of how my daughter is always going to be "different"....she can't just swing into the pizza joint to hang with her friends and grab a slice of pizza, sometimes I just want to cry. It sucks.

I know we'll get though this. We're strong.

But for today, I just feel sad...sad for her, sad for me---and I have this juvenile wish to have things go back to the way they were, before we had to learn a new vocabulary and buy utensils and inform well intending parents, etc.

Maybe we are at acceptance. And maybe that's why it's so sad today. We're realizing this diet change is forever. Her favorite foods are gone. And while I know they'll be replaced by gluten-free favorites, right now, during this transition, it seems like a very dark and lonely place for us. I think it's time to go to one of those R.O.C.K. meetings.

Thanks for letting me vent. I know you'll all understand.

Sierra's Mommy

[brazen20au]

i totally understand. for me the forever bit was the hardest bit too. it's just not fair is it. still, our children are lucky to have been diagnosed now with it and not 20, 30, 50 years ago, they have so many choices now

we are now 4 months down the track (my dd is now 3) and things are much brighter for us. you will get there (though i'm tossing up whether to have my nearly 6yo tested and HE will find it much harder to adjust if he does turn out to be a coeliac)

good luck

[ang1e0251]

she is struggling a little with depression as she discovers on a daily basis one more favorite she cannot have---ever. That's the tough part...this isn't a temporary thing, something we need to just push through and we'll come out the other side.

I don't think there are very many foods you cannot convert to this diet. She should not be denied her favorites, just convert them and make them yourself. If you post some of those items here, we will help you with a recipe. I'm not into denying myself family favorites and sitting there like a martyr while other people get to eat them.

And when I think of how my daughter is always going to be "different"....she can't just swing into the pizza joint to hang with her friends and grab a slice of pizza, sometimes I just want to cry. It sucks.

Don't expect this. There are many pizza chains getting on the gluten-free bandwagon. In our state UNO Pizza now offer gluten-free pizza and I've read about other chains in other states. In the meanwhile, while she's young, make her pizza at home!

But for today, I just feel sad...sad for her, sad for me---and I have this juvenile wish to have things go back to the way they were, before we had to learn a new vocabulary and buy utensils and inform well intending parents, etc.

It's OK to feel sad as long as you don't include your daughter in it. When she sees all the foods she can have and that you can make or buy, she'l start to adjust and soon it will be second nature to her. Include her in the cooking and choosing and she'll be a great little cook! Think how close you two will be working in the kitchen together.

Maybe we are at acceptance. And maybe that's why it's so sad today. We're realizing this diet change is forever. Her favorite foods are gone. And while I know they'll be replaced by gluten-free favorites, right now, during this transition, it seems like a very dark and lonely place for us. I think it's time to go to one of those R.O.C.K. meetings.

You are absolutely right. The support has been a huge help to me. It can make all the difference. You will be fine. It is an adjustment but she's lucky you are such a caring Mom.

[CeliacMom2008]

Hang in there! I really does get a lot easier and a lot better. The first 2 months are tough.

I completely agree with the previous post - it's OK to be sad, but don't include her in it. She will feed off your emotions - so make them POSITIVE, POSITIVE, POSITIVE! Make it a fun adventure for her. But be OK with crying on your own. Find someone (preferably not your husband because it's tough to stay up if you're bringing each other down) that you can go to and cry with and that can pick you up. For me that was my mom. She was my rock. I could cry on her shoulder and then after awhile she'd give me the tough love to get me back to thinking positively.

We've been at this for almost a year and half. And I can tell you the tears are much further apart (not gone entirely, but down to every few months vs. every few days!). My son thinks gluten-free is a breeze - and for him it pretty much is. I've learned to cook and actually enjoy it! Which if you knew me pre-Celiac you'd be amazed by that!

Some things we do that we could've done pre-Celiac and never did that help make this disease much easier to take:

Pizza and a movie night - One night a week we rent a movie, I make pizza, and we eat in the family room while enjoying our favorite pizza.

Eat outside - We eat outside A LOT! I bought inexpensive, fun plastic plates and we have lots of meals outside (weather permitting).

Fun Dinners - We try to do theme dinners with fun. Our favorite was this winter when we put on tropical music (Jimmy Buffet and such), grilled shishkabobs, fresh fruit and corn on the cob for dinner, and ate in the basement on the patio furniture. We "decorated" with the house plants and fake tree and fun night.

Try all kinds of stuff and make jokes about the products that are gross. We keep all the labels and write all over them if we liked them or hated them. This helped me remember which products were keepers and I think it made it good for my son because he could do something about crappy food. It also helped keep us focused that there are good gluten-free foods and bad ones and to just keep trying until you get the good ones.

PB&J on shaped pancakes for school lunch - your daughter will probably get into that even more than my 9 year old son! We use Pamelas.

FYI, the only food we haven't been able to find an equally delicious substitute for is licorice. Out of all the foods my son loves to have only one little thing not replaced is pretty darn good! Please do post any of her favorites that you haven't substituted yet. We will gladly help you find something. She should not go without!

Have you read Danna Korn's book on Celiac Kids. It's really good resource to get you through the low points.

And as for forever. We can't know that. Celiac Disease is a relatively new disease in the world. Our kids are very young. Take it one day at a time. There very well may be a cure or a means to make it easier in the future. Forever does sound like a long time. So just focus on this week's menu!!

Big mommy hugs to you! Tomorrow is another day and I bet it's brighter!

[one more mile]

It may not help you today but what you are doing for your child is amazing. You saving her from years of problems and suffering, My kid was 19 before we finely figured out why food made her sick. I myself have had a ton of health problems that I hope my child will avoid.

I went though all the stages of grieving with this also. Sounds like your child is going though the bartering stage. Maybe by the time she is 100 she will change her mind.

Starting at so young is really great, by the time she is a teen these foods will seem normal to her.

[ek327]

My daughter just turned 8, and was diagnosed last June. It does get easier. Last summer, we had a crisis at the grocery store--she cried over the donuts. We made donuts at home the next day!!

It is trial and error, but things get easier. I would recommend the book "No more Cupcakes and Tummyaches" by Jax Peters Lowel--a great story for kids with celiac about a kid with celiac. She is also the auther of the "Gluten Free Bible"--a must for any gluten-free household.

There are good products out there. don't be afraid to throw away bad ones--and keep a list of what you don't like.

some fav's of my daughter:

Annies Gluten free mac and cheese. (we add a little butter and extra cheese).

Bell and Evans Chicken tenders and nuggets. (Ian's nuggets are kind of gross--but thier strip in the meal are better--they don't sell the strips alone)

Pamela's Pancake and Baking mix. Great pancakes. even good with chocolate chips in them!!

Cooqi Bread--"Ellie's bread". Multigrain is also good.

Kinnickinik Bagels

Glutino English muffins--we use these as hamburger buns, toasted of course. (almost all gluten free breads need to be toasted)

Spaghetti--we like Tinkynada.

ranch dressing--wishbone. (this was a big issue for us at first--this one she liked)

good luck!!

[ek327]

OH--and Gluten free pantry's truffle brownie mix, Pamela's chocolate cake mix...

[Ahorsesoul]

I have a brain injuried dd that I put on a gluten free diet. If we said she couldn't have this we'd always mention two of her favorite things she could have. I found that worked much better. It seems we are always saying no no no....

So I tried to balance it with some yes's.

[Sierra's Mommy]

Thank you so much for your kind words of support! It is so helpful to hear from moms who have walked this path and can relate. One of the things she misses the most is bread. And it seems the choices are so overwhelming, we could benefit from some guidance. Are the prepackaged breads (tapioca loaf, etc.) really as bad as some posters have claimed? Are we better off baking our bread, and then, if so, do we use a packaged mix or start from scratch? I want to hit a home run for her on our first attempt, if at all possible. We did have some Chebe Italian bread sticks with our gluten-free pizza a week ago, and they were pretty tasty.

Any help you can provide in directing us to the best bread replacement would be great!

Thanks again for your hugs and well wishes. It means a lot!

~Sierra's Mommy

[Sierra's Mommy]

Thanks for your kind words. We haven't tested our 8 yr old DD, either. We feel the same way, if she needs to adjust to gluten-free, it will be a much harder transition. We have decided to wait until summer before we test her. Thank you so much for your support; it really means a lot!

[taweavmo3]

Hang in there! We are four years into the diet, and SO many things have changed for us. I think for many families, it is a turning point and you eventually adopt an overall healthier lifestyle.

It is such a major adjustment, let yourself go through all the stages. I stilll remember spending ages in the store and coming home with virtually nothing, and breaking down in a sobbing mess. I was angry, sad for my little girl, and did not have a clue how to cook anything anymore.

Like everyone else said, it takes time, but it will get easier. You may even find yourself at the point one day where you find the many silver linings that come with a Celiac diagnosis. That's where we are now, but it didn't happen over night by any means. Good luck, it will get better!

As for bread....I search for gluten free blogs, and try different bread recipes that look good. "Baking Classics" by Annelise Roberts is also excellent, you will not be dissapointed with any of the recipes, they are amazing.

[CeliacMom2008]

Gluten Free Pantry Sandwich Bread mix and Whole Foods 365 Days gluten-free Sandwich bread are both good mixes. They aren't the same as gluten bread, but they are definitely edible and they are WAY better than the packaged breads that have shelf lives of 2 years or whatever they are!

We used to use Guten Free Pantry bread for PB&J until my son discovered how great PB&J on Pamela's pancakes was. Now we use it for french toast, grilled on the BBQ grill with butter and Lawry's seasoning salt, and grilled cheese. It freezes and keeps well frozen. I slice it, put saran wrap between the slices and then put them in a freezer Ziploc bag. Then you can just pull out as many as you need. We do french toast about once a week this way.

If she likes denser (like whole wheat, Panera type breads) breads, let me know and I'll post a great recipe. It takes an assortment of flours, but it is really good with fried eggs, as a dinner bread, toasted with jam, or with tuna salad.

[jmjsmomma]

I really do feel your pain. We are 3 1/2 months post diagnosis with my 5 yo. He is a pleaser and has not given us an ounce of complaint, so it has been way harder on me than on him. Having two other young kids at home, trying to decide whether to go gluten free for all five of us, etc. the first two months were HARD. I always keep a sunny positive attitude around him and when talking to others about celiac in front of him. I remember very clearly in February, about 5 weeks after his dx, I dropped him off at preschool and the full load of what was going on hit me. I could not leave the parking lot for almost an hour as I sobbed and grieved in my car. I'm talking sobbing like someone had died! I had been so focused on getting the gluten out of him that I did not have time to grieve, and boy after that sob fest I felt much better. We've only been gluten free since Jan 9th, but it is pretty easy for us now. I have moments where I think of the "big picture" of what it means for him socially and I can shed a couple of tears. But I know that all that really matters in the end is his health. I know things could be so much worse, but it is still hard for us Mom's to see our children suffer or be "different". Hang in there!