Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Grieving Process For Just Diagnosed Kids
0

32 posts in this topic

The ONLY food we have found that my son used to like that we can't replace gluten-free is licorice.

You sound like such a cool mom. Mine did a lot of that too and it helped SO much.

By the way, licorice Jelly Belly jellybeans are gluten-free. B) They're not quite the same texture as the floury stuff but maybe your son will like them. I do miss all-sorts.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi,

My name is Sandy, and my 7 year old daughter just got diagnosed with Celiac Disease about a month ago. I too, am going through some rough spots with her not being able to eat her favorite foods. Although I must say, she is coping ALOT better then me!! LOL I ALWAYS take her along when we go grocery shopping and I let her pick out her own foods. ( within reason ). She does have her days when she has a little melt down, but then she goes and picks out something of hers that is at least close to what she is craving. She has actually been the one who asks " is this Gluten Free? I have Celiac Disease. ". She walks up to the counters at a fast food place and orders her own food now too. We don't eat out often, but when we do, we let her be the big girl she wants to be. I am having a hard time right now with trying to figure out what lotions, shampoos, detergents, toothpaste and stuff like that, that I should get for her. I am just so new to all of this and its hard right now. We are a low budget family too, so this is extremely hard right now budget wise. I hope that we can learn and go through this together. Did your daughter have a biopsy done? My daughter did, and they said she DID have damage done to her intestines, and I just felt horrible for her! She is feeling better though. She still sleeps ALOT though, and hopefully that will change over the next few months. I hope this will help/or at least make you feel better. :)

0

Share this post


Link to post
Share on other sites

All these suggestions are really good -- my son was dx when he was 9, my husband a few months after that. Grieving is very real. Reassure her she won't always feel this badly. It will take months to adjust. BUT...some other things to try that worked for us:

gluten free cooking school...I bought a set of utensils (basics, in colorful/fun styles). He and I cooked, the family tested, I allowed him to throw out icky stuff (and there was about a 40% fail rate!). Then we worked up to recipes. I even filmed a "lesson" to youtube to relatives. Invite her friends. Make it all a big adventure. (Fake enthusiasm if you have to)Encourage risk taking, planning, bonding!!

The "bleach" metaphor is apt. She will pick up your attitude, and you need it to be compassionate but no-nonsense. Do not feel sorry for her. (okay, do that when she's not looking)I would not bring her into a grocery store just yet. Unless it's a Whole Foods or Wegmans!!

Never, ever, EVER cave in to a gluten demand. Here in the early stages, that's especially important. Remember the bleach!!Our mantra was, and is "we'll find a way to make it work" but we also leaned on "everyone has something, this is ours". And if he would say "I can't have......" I would just reply "but you can have......". I believe children test us, poke at us with those emotionally charged questions, to test our resolve. They want to know that we feel it's not the end of the world.

0

Share this post


Link to post
Share on other sites

A couple of other suggestions - really cool lunchboxes. We ordered some made by widkins with horses. Meeting other kids with celiac if you can find them helps. Learning to make favorite foods gluten free helps.

0

Share this post


Link to post
Share on other sites

Our daughter was diagnosed at age 6 right at the beginning of first grade; it's been almost two years that she's been gluten-free, but right from birth she had gastro "issues". A few months ago, we actually did take her to a child psychologist for behavioral reasons. She was crying a lot and being mean to her friends. After listening to all we had to say, the dr. said he was convinced that her being 'different' was the core to her tantrums and attitude. He pointed out that even though we try to make things as normal as possible for her (school lunches and parties, birthdays, etc.) she picks up on all that WE have to go through to prepare for something as simple as a sleepover and it just reinforces to her how different she is. He said that he's cofident that she will outgrow this when she gets to be 10 or so - more an age of reason. We all define 'normal' in our own way. We try to celebrate her uniqueness with her and help her see that ok - maybe she's the only one with celiac disease, but what about the kids who have to sit at the peanut allergy table in the cafeteria? They have it rough too! Sometimes she will have a meltdown; the last one was after a soccer game and I didn't bring anything even remotely close to what the others had for their 'treat' afterward. Fortunately for us, she remembers how badly she used to feel and how sick she was and we can remind her of that. I also agree that the well-timed one-liners are very effective, because during the soccer incident (remember she's 8 now) when she finally stopped crying long enough to tell me "I HATE HAVING CELIAC DISEASE" I said, "You know what? I do too - it really sucks!" She knows I hate that word and it distracted her just long enough for me to pull her in my lap and comfort her until she was over it. Keep doing research and asking questions. Medical websites are great for the facts, but I have gotten more from these forums than anywhere else. It's my own little support group! Good luck!

0

Share this post


Link to post
Share on other sites




My daughter was 10 when she was diagnosed. At first when we went to the grocery store she would throw fits an cry because the first thing she saw was the bakery. So I stopped taking her for a while. I talked to her at home about what we had to do. Eventually she started going back with me. She would read the labels for me because the font is so small that I could not always read it. She is approaching her 4th year gluten free and she still gets depressed sometimes. She has come a long way. We did 5 weeks of overnight girl scout camps and she was great. It does take time but it does get easier. I always let her buy what she wants at the grocery store and even have a candy stash for those harder days. We send her favorite candy to school so she is never left out. She has learned to do all the baking and can make a great pizza. I think most Celiac have some bad days that will be there forever Whole foods has some gluten free ice cream cones that are real good for the hot summer months. We hardly buy any specialty items except flour and we buy it on line in a twenty five pound bag to save money. Hang in there and I hope it gets easier for ya.

0

Share this post


Link to post
Share on other sites

quoted from post above ""My" pizza recipe is from Bette Hagman's book The Gluten-Free Gourmet Bakes Bread. I highly recommend this book if you want to tackle baking. I originally borrowed it from the library, and then bought a copy.

I'll send you the recipe on a PM".

I will have to track down this recipe book. I have none yet and I do bake, and haven't all that much since his diagnosis in March.

thanks!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,334
    • Total Posts
      920,438
  • Topics

  • Posts

    • Thank you cyclinglady! We'll just keep pushing forward and we'll get things figured out one way or another. You have been most helpful and informative and given me some great resources and things to consider. I really appreciate it! I definitely feel better as I've felt like a crazy mom lately thinking through the test results and everything. Even if it turns out to not be celiac or gluten related, at least I can say we did our due diligence and looked under every rock to find the source of his troubles. Thanks again!  Take care! 
    • Anxiety is quite a common symptom with undiagnosed celiacs. It should improve if not disappear when you go gluten free. Be sure to CONTINUE eating gluten until the endoscopy!   Welcome to the club!
    • Although serological tests are useful for identifying celiac disease, it is well known that a small minority of celiacs are seronegative, and show no blood markers for celiac disease. A team of researchers wanted to define the prevalence and features of seronegative compared to seropositive celiac disease, and to establish whether celiac disease is a common cause of seronegative villous atrophy. View the full article
    • This was absolutely me before diagnosis.  The worst of all of my Celiac symptoms occurred in the morning.  The anxiety was terrible in the mornings, I had horrible nausea, no appetite, felt light headed, dizzy and shaky, diarrhea, stomach cramps... the works.  Honestly, I don't know if it was the symptoms causing the anxiety, the anxiety making my symptoms worse, or a combination.  I almost dropped out of school because I felt so terrible every morning I didn't want to leave the house to go to class.  The first few doctors I saw insisted all of my symptoms were psychological and tried to give me anti-depressants/anti-anxiety meds, but I knew there was something else wrong with me.  I had always been a bit "high-strung," but for the year I was really sick before diagnosis, the anxiety got out of control. I was diagnosed with celiac disease 6 months ago and have been gluten free ever since.  It took time, but everything is gradually improving.  The morning anxiety is much improved and some mornings, is completely gone.  I realized a month or two ago that I no longer spend the first hour after waking up gagging and dry-heaving, something I had done for so many years that I just thought it was normal for me.  I can brush my teeth and my tongue without feeling like I'm going to puke.  I eat breakfast now, which I have never done, because I was always too anxious and nauseous in the mornings to be hungry.  I am not "all better."  I still have bad days and even bad weeks.  If I get glutened the anxiety comes back full force.  If I'm super-stressed out or letting my health slide (not eating well, not sleeping enough) the AM anxiety seems to return.  But, it has been slowly improving over the last 6 months and has become so much more manageable.   Your anxiety could be a separate disorder from the celiac disease, but for me, it seems it was absolutely related and continues to get better.  Don't get discouraged if you don't see an immediate improvement or experience relapses after improving.  Often, I feel like it's a two-step-forward, one-step-back kind of thing, but it is getting better.
    • I have suffered with GERD for 20 years and accidently found out it was a gluten intolerance. I had gone on Atkins years ago and noticed that I had no GERD symptoms while on the diet. I didn't make the connection at that time. Then I went on the Mayo Diet back in the winter and once again, the constant was having no bread primarily. I had also noticed that I would have major attacks anytime I ate Italian food. I blamed it on the onions, the tomatoes, herbs...but I could tolerate all those foods separately. Then, like a lightning bolt...it hit me...the culprit was the "innocent" pasta. BINGO!!  I went gluten-free in March 2016 and I have had no GERD now in 5 months. I feel as if it is a gift to me.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,390
    • Most Online
      1,763

    Newest Member
    tomj777
    Joined