Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Hello I'm New Here And Wanted To Say Hello
0

6 posts in this topic

Hi everyone :) My name is Heather. My daughter Lilianna, was diagnosed this past June with celiac disease with a positive blood test. I have been postponing getting a biopsy done b/c she also has a milk protein allergy as well. We were hoping that it was just that causing her illnesses. Well, in the meantime my neice and brother in law were diagnosed received that information last night. I had done lots of research and asked them to get checked b/c they seemed symptomic unfortunately they both have it so now I'm heading to make some calls to get my Lily in to have the biopsy and need to get out of DENIAL :( A little about my Lily, she's 2 1/2 years old. She has been in and out of the hospital for blood transfusions due to IDA RBC of under 4 :( SHe's been a sick girl. We have removed all dairy from her diet and she's been maintening a low iron count but mangable. The problem we are having now is she isn't gaining weight she has held at 23lbs for over a year now. I'm devestated by her having this and as you all know it's a hard diet for a child to have to live with especially a very picky eater and with the addition of no dairy it's very challenging. Anyway I'm thankful to find this board and meet parents, share stories, and find interesting toddler friendly foods lol. Support is what we all need and I'm sure at times this is very overwhelming and it's nice to come to a place where other moms and dads face these daily challenges. Thanks for reading and I look forward to meeting all you :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome Heather, we are glad you are here :D ! THis is a wonderful place to get advise and to vent!

My 8 year old daughter has Celiac and has had it all of her life, she has always complained of abdominal pain. We both have been gluten-free since September and at first it was very hard because she is a picky eater too and would cheat while at school. She finally realized what was causing her pain, so she doesn't fight me on the diet anymore :) thank goodness.

It may seem overwhelming now but I promise it WILL get easier and when your little one begins to feel better it will ALL be worth it! :D

0

Share this post


Link to post
Share on other sites

Heather,

Welcome to the board! It's nice to have you here!

As difficult as it is right now, it sounds like you're on the right track as far as improving your daughter's health is concerned. As you may already know, milk protein sensitivity is fairly common among celiacs--although it certainly doesn't make the diet any easier! I and my two children are sensitive to both gluten and casein, so I understand the difficulties all too well! It's actually harder on us parents, though, because the kids are young enough that they won't remember what they're missing. Their food will probably be more nutritious than what we ate as children, yet equally tasty--and they can even indulge in some gluten-free/CF junk food now and then. They'll find their own comfort foods, too. The adjustment process that you're going through takes time and patience, but you will get through it--and your daughter's improved health will be the reward that makes it all worth it! Good luck to both of you!

0

Share this post


Link to post
Share on other sites

Hi Heather, I'm glad you found this site. I know it seems overwhelming right now to think of how you're going to deal with this diet day in and day out, but believe me, it does become easier, and because you feel so much better eating gluten free and milk/dairy free, I really believe our brain chemistry changes for the better, allowing us to see the more positive aspects of life and of living with Celiac (or gluten sensitivity and other allergies).

I'm thinking lately that it is much harder on the adults to learn to deal with this diet, than on the kids, because we are responsible for so much of the choosing and preparing of foods, not to mention that some people have a hard time accepting that they or their child might be different from the general population.

I told my husband last week, "No one has ever accused me of being normal!" and though I was joking, it is true. Having Celiac since age 8 (that's 51 years now) has created one unique set of personality traits, and those include perseverance, stamina, determination, and individuality. Now that I have a new grandson who has been diagnosed with gluten sensitivity and allergies to milk and dairy, I can see the value of all the years of learning about Celiac. Now I can be a guide to him, and to any other family member who finds they have these sensitivites as well. Life is good and getting better!

Your child will be so much healthier for your having learned what the reasons are for her health problems. How opportune that other family members will also be on the same diet. Have you considered that you may also be gluten sensitive (Celiac is a genetic condition)? The more the merrier on this diet, I say. I want you to know that my heart goes out to you and your family as you learn more each day.

Welda

0

Share this post


Link to post
Share on other sites

Thank you so much everybody for such a warm welcome :) We are not gluten free as of yet. Lilianna will be getting a biospy done then we will be. I also have two other children Madelynne 4 and Camden 10. Should I get them tested as well? It's funny b/c as babies and toddlers they all had what I and doctors thought, acid reflux and now I can't help but to wonder if it wasn't that at all. Has anyone else had infancy acid reflux diagnosed and then come to find out it's been celiac all along?

Heather

0

Share this post


Link to post
Share on other sites




Heather,

I believe acid reflux is associated with celiac disease. I know a one-year-old who had reflux trouble as a newborn, and now he has eczema and a distended stomach.... I have suggested celiac disease testing to his father, but I have no idea whether it will ever be done. I think it would be a very good idea to have your other children tested, since celiac disease is genetic and can be exceptionally subtle and hard to diagnose. Why wait until their intestines are damaged enough to produce "classic" symptoms? Find out now, so you can prevent future illness! Good luck to you and all of your children, especially Lilianna as she undergoes the biopsy!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,352
    • Total Posts
      920,503
  • Topics

  • Posts

    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,416
    • Most Online
      1,763

    Newest Member
    djs2117
    Joined