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Grace'smom

Grieving Process For Just Diagnosed Kids

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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.

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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. :)

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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.

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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.

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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!

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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.

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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!

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  • Forum Discussions

    To the OP, once in a while this stuff happens.  Please feel free to start a new topic if that would make it easier.  I am afraid this is just part of forums on the internet. I hope this didn’t chase you off.  
    @anasss Nobody in this thread has called anyone "ignorant," so please don't say that if it did not happen. Also, the use of all capitals is, in forums and other places on the Internet, generally considered yelling and impolite, and there ...
    Bshake, Look up the "baking soda test" ...it is a nice home test to see if your daughter could have low stomach that is triggering the ulcers or creating the perfect conditions for ulcers to develop....mastic gum as has been mentioned...
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