Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bummed Out Six Year Old


hockeymomofceliacchild

Recommended Posts

hockeymomofceliacchild Rookie

Just wanted to talk about something that happened this morning with my little guy. He's been gluten free for just over a month and quite happy and feeling a little "special" because of it. Maybe a little extra attention from mom and lots of new yummy foods. This morning I told him a package came in for him and he was really excited when I told him. But when I showed him the book "Mommy what is celiac?" I think he read the words gluten free on the bottom and threw it across the room saying he didn't like this book. :(

I know he could just be having a moment but I really think it was the whole new diet thing and bumming him out. He went to his room and started to cry. He wouldn't talk to me but he did say it was the book that upset him. I'm hoping tonight he cheers up as we make him his gluten free rice krispies that we are making for his whole class for his p.j day/ snuggle up and read day tomorrow.

I told him it was fine if he didn't like the book I'd just give it to his sister and I'm sure he'll listen in as I read it to her. lol

I'm sure there are others out there who have had to deal with kids who have gotten a bit down and out because of their new diet. Just looking for some ideas and ways to cheer him up and help him out.

He seems to think he is the ONLY one who has to eat this way and I'm sure by tonight he will be fine again but it breaks my heart and the thought of going away this weekend for his hockey tournament is a little worrisome for me. I'm going to pack all sorts of food and snacks just in case we have a hard time finding gluten free at the arena...I can just see it they will give them team pizza or hotdogs. :( oh well someday this will all be second nature to us.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Is that him in the picture ?

Irish warriors are not meant to eat Roman grains. B)

Mizzo Enthusiast

All new dx kids are sensitive, focus on the positive. After 1 year, 1 other kid my DD's age was recently diagnosed with Celiacs in her school. Now she KNOWS it exists outside our house.

On the really bright side , kuddo's to him for being able to read the words Gluten free at age 6.

eatmeat4good Enthusiast

Takala! You are hilarious!

That is just the sort of thing that will help him get over it!

When my son was 6 he fell and scraped both knees and was horrified that he had ruined his knees for good. I said, "Oh no! The skin grows back, but for now we just give them a name." He named them Rough and Tough. That made him feel good.

Much simpler issue than Celiac, but I like Takala's response. Tell him that and let us know what he says! It is very cute.

I think you handled it right to accept his anger and let him say he doesn't like the book. And brilliant again to say you would give it to his sister!

He is lucky to have such an understanding mom. He sounds like he is doing just great. Even with expressing his frustration with it all. Get it out and deal with it little guy. It sucks sometimes, but other times it is OK.

There will be challenges, but he will be able to navigate them with such an empathic mom!

Good job.

hockeymomofceliacchild Rookie

Is that him in the picture ?

Irish warriors are not meant to eat Roman grains. B)

Takala that is priceless! Yes that is him and my husband will certainly enjoy that when I tell him. My husband is half Irish and half Scottish :) Although I'm the one who claims the Irish desent and I'm a Heinz 57 lol

His name is Kaden Patrick which means welsh warrior ;)

I will be sure to tell him this. Thanks

hockeymomofceliacchild Rookie

All new dx kids are sensitive, focus on the positive. After 1 year, 1 other kid my DD's age was recently diagnosed with Celiacs in her school. Now she KNOWS it exists outside our house.

On the really bright side , kuddo's to him for being able to read the words Gluten free at age 6.

His reading has improved immensely this year, I was worried about his then something clicked and now he is way ahead.

He is learning all about gluten and letting everyone know he can't eat it. He still gets confused sometimes he looks at a label and says "that has a "g" on it I can't eat it" and I have to say "no sweetie that means grams..." lol

I am actually planning a gluten free taste testing party and inviting a bunch of people that I know have celiac. I figure this way he will see that he isn't the only one out there. He already thinks it is cool that him and uncle Kev get to be dinner buddies :)

hockeymomofceliacchild Rookie

Takala! You are hilarious!

That is just the sort of thing that will help him get over it!

When my son was 6 he fell and scraped both knees and was horrified that he had ruined his knees for good. I said, "Oh no! The skin grows back, but for now we just give them a name." He named them Rough and Tough. That made him feel good.

Much simpler issue than Celiac, but I like Takala's response. Tell him that and let us know what he says! It is very cute.

I think you handled it right to accept his anger and let him say he doesn't like the book. And brilliant again to say you would give it to his sister!

He is lucky to have such an understanding mom. He sounds like he is doing just great. Even with expressing his frustration with it all. Get it out and deal with it little guy. It sucks sometimes, but other times it is OK.

There will be challenges, but he will be able to navigate them with such an empathic mom!

Good job.

Thanks so much :) I have to admit that just waiting for my bloodwork is hard for me. Everytime I put something in my mouth I think sniff, sniff this could be the last time I eat this! LOL So I can imagine how hard it is for him and Im NOT on the diet and my not have to be. lol


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Juliebove Rising Star

My daughter was 6 when she was diagnosed. She has allergies and not celiac. I bought her books about food allergies and she refused to have anything to do with them. I wound up donating them to the school when they were asking for books.

I don't really know why the books upset her so much. She does like it when we find gluten-free products in regular stores like the grocery store or Walmart or Target. I think she feels that these are regular products that anyone might eat. I think she dislikes the focus on "special" foods. But I'm just guessing.

cahill Collaborator

Yes that is him and my husband will certainly enjoy that when I tell him. My husband is half Irish and half Scottish :) Although I'm the one who claims the Irish desent and I'm a Heinz 57 lol

His name is Kaden Patrick which means welsh warrior ;)

I will be sure to tell him this. Thanks

I am actually planning a gluten free taste testing party and inviting a bunch of people that I know have celiac. I figure this way he will see that he isn't the only one out there. He already thinks it is cool that him and uncle Kev get to be dinner buddies :)

and a most handsome young lad he is :D

I think the taste testing party and introducing him to others that have celiacs is an excellent idea,,, Feeling as if you are the only one who has to deal with this is an awful ,lonely feeling. Helping him to establish a support system ( in addition to you and dad) is a wonderful thing :D

srall Contributor

My daughter (7) went to a birthday party at McDonald's the other night, with her own food. Before that the girls had been at the swimming pool, and I think because my daughter was the only one who didn't go to the birthday girl's school, she was already being teased and bullied a little bit at the pool. (I stayed so I was witness to this). And then to have to drive her to McD's with her own "special" food almost made us just go home. But on the way we talked about downplaying it (I am also gluten free so I've learned the fine art of downplaying eating) so she mostly just played in the playhouse and nibbled on a muffin, then ran off to play again. We bought her dad a happy meal so she could also have a toy.

Just from the aspect of knowing that kids might be teased for this just breaks my heart. It's already hard enough to forego all the foods too. But I tell myself and my daughter when she will listen, that by growing up eating only the healthiest foods she will feel better, look better, stay slender, have whiter teeth and bouncier hair. (Although your son already has fantastic hair). I guess like us, kids learn that the trade off for eating this way is feeling great as opposed to feeling awful all the time. I wish you luck with her your son. It's tough.

divamomma Enthusiast

Funny, my daughter did the same thing with the same book! i knew she was feeling sad about having celiac disease and what it entails. I go to a support group and have lots of internet resources that help me, she has nothing. I ordered the book thinking yay, it will be aimed at kids and she can relate. Nope! It came in the mail and she wanted nothing to do with it! My older daughter read it (which is also helpful) but the daughter with celiac hid the book on her shelf and wants nothing to do with it.

I think it is hard for kids as they don't have anything for celiac kids. No support groups, no playgroups etc. It is also tough as kids are different ages and require differnt things. I find what has helped is taking the focus off of food. Letting her have lots of yummy things to eat so she doesn't feel deprived. ALso, focusing on what she CAN still have is helpful. Not only for her but for me as well.

hockeymomofceliacchild Rookie

Thanks everyone :)

It was a hard weekend for us at a hockey tournament with all his team. We felt like we were being anti-social all the time because we had to go eat at a different restaurant (steak and potatoes at the hotels restaurant downstairs) while the kids were in the pool and then having a pizza party after. It didn't seem to bother my son in the least we went to the pool after ourselves and we had lots of snacks for him for the room and at the arena. I think it was harder on me then him. lol A few times his friends tried to share donuts etc with him because he didn't have any. But he had a ton of other goodies to eat. It is hard for them to understand it but thankfully no one teased him about it.

The book still sits there but at least my husband read some info on the subject! LOL It seems I am the only one doing research so it was nice he had some information to read. lol

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.