Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

23 Month Old Daughter Possibly With Celiac...


Kassidy's mom

Recommended Posts

Kassidy's mom Rookie

Hi

I'm looking for advice, tips and any overall morale boosting I can get right now.

My 23 month old daughter, Kassidy looks to have Celiac ( blood screen positive and very symptomatic)

She goes in for her biopsy first thing tomorrow morning. She is quite anemic and has been very sick for about 6 weeks.....has lost 4 pounds in the past 3 months.

Any words of wisdom? I'm feeling very frazzled right now with the thought of being a gluten free family and feeling very sad for her-wishing we had figured this out a long time ago. She has been so miserable- a very colicky baby and overall has not ever been real content or happy.

To throw a wrench in things, my almost 4 year old son has Down syndrome and the doctor said he more than likely has it too, although he is asymptomatic at this point.

Help me sort this out, please! :(


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



Celiac.com Sponsor (A8-M):



Kasey'sMom Enthusiast

Hi Kassidy's Mom,

Welcome to the forum!

You and your family will be in my prayers. It is so difficult to see you child suffer while waiting on a diagnosis. I remember feeling so helpless but releived when we found out what the problems were.

Just remember you will make it through this. You've been given a strong instinct that helps you decided when something is not right with your child. I still feel guilty at times that we didn't find out sooner. Who knows the tests might not have even been positive anyway. We had to be very persistant and had to continue to search for answers after seeing many doctors. I know that you too will find the answers that your family needs to be healthy. :)

Please let me know how things go and feel free to e-mail or PM me anytime.

Take Care :)

mcsteffi Rookie

I too have a 22 month old that has celiac. We just got the results back today that said for sure but when the dr mentioned it and I looked it up... I knew that was it. He has the biggest belly and has no energy at all. I just want him to be able to play with the other kids. He will watch them. It is so sad. I am not sure how long he has had it... probably around 12 to 15 months.... and I feel so guilty for not seeing that something was wrong. So I completely understand where you are coming from.

lbsteenwyk Explorer

Hi Kassidy's Mom:

It is normal to feel some grief with this diagnosis. The best advice I can give you is not to dwell on it. I always try to be thankful that my child doesn't have something worse! If you haven't yet had your older child tested, I would do so immediately, so that the resluts won't be affected by having less gluten in his diet. (It's inevitable that you'll feed him less gluten when you put your other child on the gluten-free diet.) Actually, having both your children on the diet will make your life much easier, so I think that's a positive thing.

Another positive is that most children recover very quickly once they become gluten free. You may see dramatic results within a week or two.

Even though the gluten-free diet is overwhealming at first, you will get the hang of it quickly. Read everything you can on this site; there is a ton of great information, especially in this forum. In six months you'll feel like a pro! Good luck and feel free to ask questions as they arise.

coralex Newbie
I too have a 22 month old that has celiac.  We just got the results back today that said for sure but when the dr mentioned it and I looked it up... I knew that was it.  He has the biggest belly and has no energy at all.  I just want him to be able to play with the other kids.  He will watch them.  It is so sad.  I am not sure how long he has had it... probably around 12 to 15 months.... and I feel so guilty for not seeing that something was wrong.  So I completely understand where you are coming from.

<{POST_SNAPBACK}>

You did the right thing though - please try not to be so hard on yourself!! The nice thing is that before too long you'll see him playing and running, and full of energy. It may take a little while, though, for him to completely rebound. It's really hard when this disease is so little known, and no one can offer you any advice or you get conflicting information. I just wanted to respond because I felt so bad for you when you said you felt guilty.

taweavmo3 Enthusiast

Welcome! I have to agree with everyone else, don't be so hard on yourself. There was nothing you could have done differently, especially since most people (docs included) don't know a thing about Celiac! Your little girl is still very young, and she'll bounce back very soon and be healthier and stronger than ever. It will take time to get back to 100%, but she will get there. And as time goes on, you'll wonder what you were stressing about at all.

This diet will give your dd the chance to lead a normal life she otherwise would not have had. Give yourself time to grieve and to be sad....I think that is important too. And, expect to make mistakes in the beginning, we all do. Don't beat yourself up over them, just learn and move on. We've been gluten-free for six months, and we still have gluten accidents and make mistakes, it's gonna happen. But, you will get it...and I think you'll find the sadness fading away as you start to see the drastic improvements in your little girl. That is what has helped me the most through this.

Use this board or a support group alot in the beginning, there is almost always someone on here who can answer any question you may have. And, if no one has mentioned it yet........get a Dana Korn book, called "Raising our Celiac Kids" I believe. It's an easy but informative read, and great for family members too. Best of luck to you and your daughter.

VydorScope Proficient

I dunno that I can add much to what has been said... but I am a father wth a 2year old son that had the same blood/bsipoy done around the age of your child. If I can answer any speicifc questions let me know! It gets better... once you start the gluten-free diet and start seeing your child getting better and better, and growing normaly again, all the stress you feel now will seem minor compared to the joy at having an ANSWER. Theres alot of power in that feeling when you move form helpless to having an ANSWER.


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



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

I still feel a twinge of guilt when I look at pictures of my Celiac son sitting in front of a gigantic gluten filled birthday cake... but then I think better of it. I don't deserve that guilt. You and I and all the other parents here are doing our damned best. My son changed so much after going gluten free, so quickly-- it was like having two separate children. First I had a miserable, colicky, non-responsive, non-verbal, lethargic, pained, mess of a child-- then I had a bright, sunny, happy, pain-free, enthusiastic, healthy, creative, imaginative, bright, energetic child... all within a four day period. So, going gluten free will do miracles for a celiac. Just look forward to the transition from a sick child to a healthy one. That will give you the strenght you need to soldier through the challenging days.

key Contributor

We too have been blessed with two kids with health problems. My celiac son also has Neurofibromatosis1(something I had never heard of before). Anyway, it took us probably 6 months to figure out what was going on. Really from 9months to 14 months were the worst. Don't beat yourself up about it. My son had had tests and I ended up figuring it out and he too became a different child.

You will be so excited to see your baby grow and thrive. Everyday I am so thankful for him. He is wonderful, smart, happy, running everywhere, etc. Before he was cranky, slept all the time, cried all the time, didn't eat, didn't grow. It was pitiful.

You will adjust to the diet, but it is a challenge for I would say the first year especially. Trying to find the best foods that are gluten-free. Having Gluten accidents. We just don't eat out anymore at all. Plus be sure that you call about every product you are unsure of, because I have made that mistake.

It will get better and the joy of seeing your child get better is wonderful. All worth the diet most days!

Good luck,

Monica

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,880
    • Most Online (within 30 mins)
      7,748

    juliehegarty
    Newest Member
    juliehegarty
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @terrymouse! Your GI doc is correct. Going gluten free now will allow healing to occur in the villous lining of the small bowel such that the endoscopy/biopsy may not show the damage to the villous architecture that is characteristic of celiac disease. Since your celiac blood antibody tests results are on the low side and don't "scream" of celiac disease I think it is important to go forward with the endoscopy/biopsy while still consuming gluten to ensure it will not be a wasted effort. The last thing you want is to have two different test modalities that unnecessarily contradict one another. So, unless the continued consumption of gluten poses an immediate and significant threat to your health, my advice is to (excuse the pun) "gut it out" until the endoscopy/biopsy happens. There is also the option of temporarily going gluten free and then undertaking a "gluten challenge" in the weeks leading up to the appointment in September. Current guidelines for the gluten challenge are the daily consumption of at least 10g of gluten (the amount found in about 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of the procedure. But I would certainly give it longer than two weeks to be sure. And in view of the fact that it could happen sooner if there is a cancellation, I would encourage you to not go gluten free until after the procedure if your health permits. By the way, what are your symptoms? What led you to investigate celiac disease as the cause of your medical issues?
    • RMJ
      I had an endoscopy where there was no visible damage but biopsies showed damage. I even asked beforehand if the endoscope had good enough magnification to see the villi!  I hope you get a clear answer from the biopsies.
    • terrymouse
      I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn't eliminate gluten then? Or stop and start again closer to the appointment date. But I'm also on the wait list in case they can get me in sooner, because I'm losing weight. I don't want to have to go back and do it over again if I can help it. They also were unsure if there isn't something else wrong with my stomach, so that's a possibility. I don't have the details but from what I understood my blood tests results were positive but on the low end. So I'm getting mixed up here, do I go gluten-free or not? Would 2.5 months of being gluten-free make any noticable difference? 
    • knitty kitty
      Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac.  What did your doctor recommend? What about your Vitamin D?  It helps regulate the immune system.  
    • ehb
      @knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily 
×
×
  • Create New...