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

New Parent To Celiac Child- Very Worried

Erwin Heuck

Recommended Posts

Erwin Heuck Newbie
Erwin Heuck
Posted

My 2 1/2 year old son was "failing to thrive", and was just diagnosed as celiac, based on high level antibodies in bloodstream. We are waiting to get a biopsy done to confirm 100%, and it's killing me to keep feeding him something that may do him permanent harm.

His eating habits have always been poor, and I'm wondering assuming Celiac is confirmed, can anyone comment on following:

- how long for gut to repair itself?

- did increased appetite result from abstaining from gluten?

- how do I know he's getting the Iron/Folic/B12 he needs for developement?

- How agressive should I be with Dr's to ensure he's getting appropriate nourishment/supplement during this critical stage of his developement?

Worried sick in Regina Sask.

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

Celiac.com Sponsor (A8-M):


dandelionmom Enthusiast
dandelionmom
Posted
- how long for gut to repair itself?

- did increased appetite result from abstaining from gluten?

- how do I know he's getting the Iron/Folic/B12 he needs for developement?

- How agressive should I be with Dr's to ensure he's getting appropriate nourishment/supplement during this critical stage of his developement?

-My daughter had almost instant improvement. She was feeling better within days. But, we're still seeing signs of improvement 6 months down the road!

-She is not hungrier but will eat more of a variety of food than ever before (this has been a gradual change). She is gaining weight (was a size 2T and is now almost grown out of 4s!) because she is now able to absorb her food.

-Gluten is not necessary for a healthy diet. He'll be able to get all the nutrients he needs from fruit, veggies, meats, dairy (but it is best to lay off the dairy while healing), and other grains (rice, corn, buckwheat, etc). Plus, now he'll actually be able to fully absorb the nutrients from his food.

-Honestly, my doctors weren't that helpful when we were starting the gluten-free diet. I had to figure most of it out for myself. I read lots (from this website, other sites, and a couple of great books by Dana Korn) and learned a lot about nutrition and celiac disease on my own.

I know how overwhelming and worrying this is and I'm sorry you're going through all of this right now. The great thing is now you have a diagnosis! And celiac disease is so treatable! Very soon, it won't seem so hard and your child will be feeling so much better.

LauraWass Rookie
LauraWass
Posted
My 2 1/2 year old son was "failing to thrive", and was just diagnosed as celiac, based on high level antibodies in bloodstream. We are waiting to get a biopsy done to confirm 100%, and it's killing me to keep feeding him something that may do him permanent harm.

His eating habits have always been poor, and I'm wondering assuming Celiac is confirmed, can anyone comment on following:

- how long for gut to repair itself?

- did increased appetite result from abstaining from gluten?

- how do I know he's getting the Iron/Folic/B12 he needs for developement?

- How agressive should I be with Dr's to ensure he's getting appropriate nourishment/supplement during this critical stage of his developement?

Worried sick in Regina Sask.

Hi--

Our daughter turned 2 in November and was diagnosed shortly after with celiac disease. My husband and I felt the same way as you--it was killing us to feed her gluten while waiting for the appointment for the biopsy. Luckily we did not have to wait too long. Anyway--just wanted to know that you are not alone--it is very scary and overwhelming at first, but it does get easier.

The gut can start to repair itself very shortly after starting the gluten-free diet and I think it depends on the individual. My daughter starting feeling better about a week after, and now it has been about 4 weeks and she is like a new person. I think that it can take 6 months or longer for things to completely be healed but I am not sure. She goes back to the doc after 3 months for a check up to see how her blood levels are doing.

We saw a huge increase in appetite at first and then it tapered a little--I think she was so excited to not have a tummy ache she was eating everything in sight!

Our doctor set us up with a diatician who was a big help, and both suggested putting Alana on a complete vitamin to ensure that she is getting everything she needs. The diatician pointed out that most cereals, for example, are fortified, but gluten-free cereals are not.

Hope this helps a little. Good luck and hang in there!

Laura

thepeach80 Rookie
thepeach80
Posted

Our GI has a nutritionist we can talk to at anytime. I would make use of that if it's offered. I haven't found anything that can't be replaced w/ a gluten free product, it may be a little different, but you have a lot of options.

For Evan, he stopped eating as much when we went gluten free. We think he was eating so much b/c he wasn't absorbing right and now he is (though he does not have an official diagnosis). He's gotten taller too. Yay!

shan Contributor
shan
Posted

My daughter was just over 2 when we biopsied her and she could have fit into her brother 9-12 month clothes!!

Having said that, today she is wearing age 4, not that she is big or fat for her age, but she has a hearty apetite now, and before she ONLY ate cheerios and pasta!! Now she'll eat almost anything i put on her plate (everything but veggies!)

I was also very worried about her vitamins - she didn't get anything for 2 full years!! So i got hold of a gluten free multi vitamin, childrens chewable and that's what she has everyday! In case you want to know, it is the FREEDA vitamins, i don't like the taste of them (had to taste what i give her ;) ) but i made it into a treat and she loves them!!

ryebaby0 Enthusiast
ryebaby0
Posted

Hang in there! It will get easier. My son was so sick he ended up in the hospital for 7 weeks -- but now is a very healthy, very normal size 14 yr. old. Something like the 50th for height and 75th for weight, after literally being off the growth charts. He grew about 6.5 inches in the 18 months after dx. He took iron and zinc supplements for about 6 months but just takes a regular multi now. He has other medical issues and is tested regularly for nutrient levels and is always within norms.

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. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748
    Taraceliacmama
    Newest Member
    Taraceliacmama
    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

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.