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

My Son Has His Frst Post Dx Party Tomorrow. I'm Scared

jsmjboertlein

Recommended Posts

jsmjboertlein Rookie
jsmjboertlein
Posted

My son fell ill shortly after weaning from the breast. He almost died at age 3 by bleeding out from his nose and mouth massive quantities of blood. He's been through a barrage of testing through St. Jude and finally got a dx of celiac disease. He is so much better off gluten. He rarely has a bleed and if he does we can always track it back to some minor cross contamination. Well tomorrow he has a "pizzas n pj's" party at his cousin's house. There will be 20 some parents and kids his age and younger there. He is 5. I am bringing his favorite gluten-free pizza in my own pan, my own dedicated pizza cutter, home made gluten-free chocolate chip cookies to share and his own cup. A friend is bringing cupcakes, so I will probably make him a gluten-free one to bring too. So I have that all figured out but I'm so scared another little one might drink from his cup, or touch his mouth after eating gluten. Sadly that's all it takes for my baby. I once kissed him after I ate a muffin and he went into anaphalaxis. This was before we knew he was sick. He doesn't have anaphalaxis anymore but he bleeds so bad when he comes into contact with gluten and there's no way to stop it. He is very very sensitive to gluten. I don't wanna even take him because of all of the risks, but he is looking so foward to it, and we have to regain some sort of normalcy here. Is there anything else you would reccomend to help me relax? I don't want to make him stand out any more than I absoloutely have to. He gets self concious and I look like an overprotective drama queen. Any tips? What do you all do for parties?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

A Haz-Mat suit? Naw, every kid would want one.

What about each kid has a cup with thier name on it? Would work if they are all old enough to read thier names. Also, lots of different color cups with stickers on them. Hand each kid one and note the sticker. "Joey, your cup had a green star on a yellow cup." Susie, you have a yellow flower on a red cup.

Kid can wash hands before eating and then everyone wash after. This and the cups can be covered up as germ protection and keeping food messes off the furniture.

Otherwise, you will have to take an active role in what he is doing. At 5, they don't mind if you play along. You can play cars with them and try to keep your kid from only playing with the blue truck and the green car. If he lets go, you can grab it before another kid does. I know this is extreme but it sounds like he is very sensitive or maybe allergic, too.

You will become a popular mom. Every grade school parent loves an extra parent at parties.

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

Good ideas! I so wish I could put him in a bubble. He is also allergic to wheat. I am excited for him to be with his friends, but scared. O ya I will be hovering!

celiac-mommy Collaborator
celiac-mommy
Posted

Yeah, I think your biggest threat will be the other kids' pizza covered hands and faces and the crumbs from the pizza and cupcakes. From personal experience, especially with kids this age, the crumbs get all over the floor, which get stepped on and thus moved from room to room. It's a tuffy.... I'd be hovering like crazy too ;)

kareng Grand Master
kareng
Posted

Thought some more. Maybe you can have some kids to your house sometimes or all the time. They could wash hands before coming in, you could serve only gluten-free snacks, play with gluten-free toys, etc. Talk to the parents of his friends. We like to know what to look for or avoid or do special. My kids are teens now but as kids, they had friends with food issues or one in a wheelchair. They always wanted to make arrangements for the kids to have fun. When I was a kid, my brother's little 5 year old friend lost her hair to chemo. She wore a wig. It was a big no-no to touch her wig. Once the kids knew, they avoided it.

Skylark Collaborator
Skylark
Posted

Gosh, I don't have kids or a clue. I'd be wanting to provide all the food and make the party gluten-free, which is as almost as impractical as putting him in a bubble. :blink:

Let us know how it turns out. I am curious and really hoping for you that he has a great time and doesn't get sick.

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

Thanks everyone. I just got home from the store after buying all of his gluten-free stuff. I will def let you all know how it goes. I'm a nervous wreck.

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

Celiac.com Sponsor (A8-M):


jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

Well today's the day. I'll log on later and let you all know how it went

cahill Collaborator
cahill
Posted

Well today's the day. I'll log on later and let you all know how it went

I hope everything goes well. You and the little guy have a good time and stay safe

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

We just arrived home and I would say it went fairly well! There weren't nearly that many kids there and we had one close call. One of the dads handed my son a plate of reg. pizza, but my guy was aware enough to say no thanks that's not my kind. Then I grabbed a plate and gave him his pizza and later saw some of his buddies pizza on his plate. Thankfully I think he was done eating by then and if he got any cross contamination at all, I don't know, but he hasn't acted like he did. He had a great time and the other moms loved his gluten-free cookies! Now I'm excited for the next one! I think you aren't allowed to post links to pics on this site? Is that right? Let me know if I'm mistaken on that, and I will link to some of the party pics!!

psawyer Proficient
psawyer
Posted

I think you aren't allowed to post links to pics on this site? Is that right? Let me know if I'm mistaken on that, and I will link to some of the party pics!!

You can post pictures or links to pictures, as long as the content is consistent with our rules.

If the pictures are on a sharing site, such as Flickr or PhotoBucket, then you can share them.

You can post a link:

[url=http://www.wherever.com/picture]Click here.[/url]
or you can hot link the picture so it shows up in your post: 
[img=http://www.wherever.com/picture]

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

You can post pictures or links to pictures, as long as the content is consistent with our rules.

If the pictures are on a sharing site, such as Flickr or PhotoBucket, then you can share them.

You can post a link:

[url=http://www.wherever.com/picture]Click here.[/url]
or you can hot link the picture so it shows up in your post: 
[img=http://www.wherever.com/picture]

Awsome thanks so much!

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

Hmm I tried to put a pic up from flickr but it wont let me do it. O well.

psawyer Proficient
psawyer
Posted

Here is an example of an image link, from my photobucket:

[img=http://i42.photobucket.com/albums/e339/tortoiseshell2002/Psillies/Martini1-1.webp]

Produces

Martini1-1.webp

Cheers!

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

Here is an example of an image link, from my photobucket:

[img=http://i42.photobucket.com/albums/e339/tortoiseshell2002/Psillies/Martini1-1.webp]

Produces

Martini1-1.webp

Cheers!

MM. I'll take ten! LOL, sorry, got sidetracked. I will try again tomorrow. I'm beat! Thanks for your help!

domesticactivist Collaborator
domesticactivist
Posted

I was thinking of you and your little guy but didn't get a chance to respond. It sounds like it went really well! I'm happy for you and I'm sure your son will get to enjoy many parties from here on out!

Skylark Collaborator
Skylark
Posted

That's great news! I'm so glad he had a good time and didn't get sick.

jsmjboertlein Rookie
jsmjboertlein
Posted
  • Author

Thanks you guys! I'm thrilled with how it went. I think I am going to have a kid party too. He has some party catchin up to do.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
    2. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
    3. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    4. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    5. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,355
    • Most Online (within 30 mins)
      7,748
    tealangel09
    Newest Member
    tealangel09
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.