12 replies to this topic

[jesslee23]

We got the blood tests back on my 21 month old baby boy on Friday and his Gliadin IgA was 51.1 (normal range being <25). We meet with the Ped Gastorenterologist (SP?) on next Tuesday but for now we are considering him to be Celiac. I don't know if we will do the biopsy or not. He has already had 3 surgeries, been hospitalized 4 times and had more blood draws than I can count. He is so incredibly traumatized. I just don't know.

I already got the Kids with Celiac book and I've been reading it. I've written a letter to give to all of the adults who help with Joshwa and just those that love him to explain what he can and can't have. I have this happy persona on that I'm so glad that we have a reason, it's only diet, no drugs or anything, blah blah blah blah blah. I'm so heartbroken.

At first, I was happy. I did think all those things. Now I can't stop thinking about the loss. My husband was trying to make light of the subject yesterday (as husband's often do) and joked that on Joshwa's first date he'll take the girl to the restaurant, have her order off the menu and will have brought his own food. That just crushed me. The fact that he can't lick an envelope (not that it's the funnest thing ever), for some reason, devistates me.

What's wrong with me? Why can't I look at the positive about this? Are these normal feelings or am I just losing it?

-Jessie

[corbintlg]

Jessie:

No - those are all normal feelings. I am 28, diagnosed at 2 with Celiac and unfortunately I think I have passed it on to one of my sons - who is 3 and getting ready to be tested. My 4 yr old doesn't show any signs of it and I'm hoping never does. I'm depressed and feel so bad that I may be the one responsible for giving it to my son. It is not easy being a celiac but yes the bright side of it is that it is JUST diet maintaining.

Believe me, now versus 25 yrs ago when i was first diagnosed - there are so many foods out there replacing those we can't eat. Be a great mother like my mom was for me - in buying rice flour,etc. to bake me my birthday cakes, etc. She also made homemade soups, cookies, pizza crust, that I could eat. The entire family ate a lot of the stuff, like the rice/corn pastas and never knew the difference. It also saved her time in having to fix two different types of dinners each night. I'll be honest, as a child with Celiac and now an adult and having a child with it, it is not easy. But getting much easier. You can order foods, ingredients on-line and/or purchase them at food stores such as Wild Oats, Whole Foods and even my local grocery store has a few things.

An adjustment to your life is all that it is. Hang in there. You will get through it. And look at it this way, your son is young - he doesn't really know any better yet. The toughest for me was that I had never tasted a cookie, piece of cake, pasta, piece of pizza, bun off of a hamburger, etc. and then when I turned 13-14 yrs old - I rebelled and started eating everything! Now I am back on the gluten-free diet - 1 week now - and struggling to stay on the diet. If your son does have gluten-free, stress to him while growing up to stay on the diet, and find alternatives for him to eat.

Good luck. This site and message board is great for information, suggestions, and most of all SUPPORT. hang in there.

Tammy

[tarnalberry]

((hugs)) jessie. No, I don't think you're losing it. :-) You've had your expectations shot down, and it's a loss. (There was a post on here a while back about the process of grieving for loss - even the loss of being able to eat gluten. It's really true. A loss is a loss, and you're going to miss it, and grieve it.)

I think that one of the things that can make it harder, if you haven't gone through something very similar, is that your assumptions and expectations are dashed and tossed out into the gutter, but they've not been replaced by anything else. The expectation that he can't pick up a box of Kraft Mac n' Cheese from anywhere, and have dinner, is gone, but not yet replaced by the expectation that he'll have a kitchen full of healthy foods and be able to whip up a nutritious, gluten-free meal in just about the same amount of time, but tasting a lot better, isn't in place yet.

It's easy to focus on the "can't"s in life, but there are a lot of "can"s as well here, and it takes some time to adjust, and realize that some of the things you took for granted and never thought about before are "can't"s, but there are just as many (no, more) things that you took for granted and never thought about before that are "can"s.

It's ok to be sad, to be upset, heck, to have a bit of that angry "Why me?" (or "Why him?") feeling. With time, I think, you'll adapt to the situation and it won't be so bad any longer.

[sarahnaser]

Hello,

i feel the exact same way. i am thinking of all the food she can't eat, the extra work i have to do, kissing her spouse who just had a slice of pizza.

I think it is a normal part of the process. my daughter was 2 when she was diagnosed with food allergies to chicken , eggs, food perservatives and wheat. It was a tough few months before i could even cook something without getting depressed. but now it is routine. the separate plates the separate meal planning.

NOw at age 6 she is being tested for celiac which will remove MORE stuff off her eatable list . I am now going through the depression stage again. But i know as soon as i pulll myself together and vent it out and get some help from people like you , that can feel the same feeling, i will be ok. Then i will get my action plan together and my daughter will know that things are under control. they need to feel that we are under control. though i feel i don't know what i am doing but i am trying my bests to come up with a HEALTHY meal once a day!!!!


ANy suggestion from out there will be helpful.

sarah naser

[hillary_henry@yahoo.com]

Hi Jessie,

Your not alone with your feelings; my daughter who is five was diagonised last month so I went to the health food store and bought a bunch of gluten free products (it cost me a bundle) needless to say she didn't care for any of it. Talk about grieving theres not a day that I dont cry for her. This week I feel much better I went to "the shopping and food forum" there you will find a list of mainstream gluten-free foods, you will be surprised with some of the foods your little one can still eat I know I was.

Hillary

[jesslee23]

Thanks everyone for all the kind thoughts and words. I'm doing a little bit better today. It's just so hard to think about the bad stuff. I'm arming myself with education and going from there. Taking it one step at a time, you know?

[wildones]

I understand how you are feeling. I have been really stressed lately about not being able to do 'normal stuff' without a great deal of effort. I am trying to focus on ways to make our new lifestyle simpler and more comfortable. My sons and I have been recently diagnosed. My boys are 2 of my triplets, and their sisiter does not have any symptoms and has not been tested.
My son who is handling things the best, has seen a big relief from his pain after going gluten-free, so it seems to be easier for him. He has had 32 surgeries, had 3/4 of his intestines removed, many hospitalizations, chronic pain and nausea, many many specialists and chronic ongoing growth and nutrition issues, besides the celiac. I am really trying not to stress over the challenges, but look at the positives for him especially. My other son is having a lot more trouble accepting the diagnosis, because his symtoms are a lot less tangible, and so he doesn't see a big difference.
If you can, try and focus on the health benefits, and the fact that he doesn't 'know any better'. If he doesn't know what he is 'missing' then hopefully it will be much easier on him.
I think what you are feeling is normal, but acceptance will feel normal soon too
Here's a poem, that a friend gave me when my son was so ill in the hospital as a newborn.

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I don't know if it exactly fits your situation, or others diagnosed w/ celiac, but it helps to see things a new way.

[jesslee23]

Wow, that is so awesome. Thank you for that. It really made perfect sense to me.

You have quite a story. I'm sure that I'll pick your brain more often!

Thanks again,

Jessie

[DLayman]

Joshwa will just have to take his first date to Outback steakhouse hehe they have gluten free stuff on their menu.. check out their web site.. and he can also take her to DQ and share a nice dish of soft serve or a blizzard.. or a DQ cake special ordered without the cookie crunch in the middle! there are several places that have gluten-free items..you just have to look around.

There is also a Yahoo group called Celiackids and Dana Korn the author of the book you got is an active member.
It's another resourse for you!
Welcome!

Denise

[mariab43]

Hi jessie

I totally understand how you feel! I think it is completely normal.


My daughter was diagnosed in Dec. through a blood test. She just turned 2. I was pretty devastated at first, and cried the whole day when i found out. My 6 week old son was in the hospital at the time so it was pretty stressful.

After the first day though i felt relieved because we finally knew what was wrong with her and knew what we needed to do to make her healthy. Also she could have been diagnosed with something much worse!

She also has been traumatized by tests and doctors and I was having such anxiety about her having the biopsy done. She had it in the first week of Feb. and it went much smoother than i had anticipated.

My husband reacts just like yours. He thought I was crazy when I got teary eyed in the grocery store looking at all the foods she can't have.

Like the other posters said there is really so much information and products available. It certainly will mean some changes in your lives. I feel heart heavy when I look at her, but i take great joy in seeing the happy child she has become since we have made changes in her diet.

So stay strong! it will get easier and easier every day.

Maria

[wclemens]

Hi Jessie, I'm a 59 year old retired school teacher and have had Celiac since age 8, when no one even knew what it was or what to do about the symptoms. My asthma was the only way I could monitor what the foods were doing.

Now I am a person who runs circles around others, even younger people, with all the energy I have. I only need a few hours sleep, and I have so many projects going that no one else even has an inkling that I am so busy.

The key to getting well was eliminating everything from my diet except meats, fruits, and vegetables, then adding one food at a time to see if I would wheeze. It would take 15 minutes to know. Now I have learned the importance of knowing exactly what I am putting in my mouth. I read each and every label and ingredient on anything I eat or use as part of a recipe.

In addition to wheat and all other grains, I am also allergic to milk, dairy, butter, chocolate, casein, whey, egg whites, and yeast. That makes sense because butter, chocolate, casein and whey all come from milk.

Here is the exciting part. We are on the forefront of a new revolution in health. So many people are being diagnosed each day, that whatever we learn we can pass on. We have been chosen to be part of something that most people don't understand, and everything we can learn about Celiac will help someone else.

My new grandson has Celiac. I keep him 5 days a week and was there to help discover his allergies to milk and dairy at just a couple of weeks of age. Another family member has just been diagnosed. It makes sense that my job now is to help lead these family members through the maze and out to the other end, and that we will all feel better once we have eliminated the poisons that cause disease.

I wish you lots of strength, good success at sticking to your diet, the ability to learn a little more each and every day, and the courage to stick your hand out to someone and say, "I have Celiac too--let me help you with what I have learned."
It may be the best thing they have heard all day. Always, Welda

[wdavie]

Try and keep your chin up.
A Gliadin IGa positive does not constitute a Celiac diagnosis. I am Iga Pos and so is one of my sons neither of us are Celiac. Did they test his Ttg level this is far more appropriate for diagnosis.
Also the biopsy is far better that just this test to tell. I say be 100% sure before making major lifestyle changes. Also he should not go Gluten free until all the tests are done as it will effect the results.
I went through the greiving when Grace was diagnosed (by very Pos biopsy in Sept 03) and I still have crappy days. But hey she is so much healthier and happier it far out weighs me feeling sorry and sad.
Good luck with the further testing.
Cheers
Wendy