Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Mommy2Ellie

Failure To Thrive

Rate this topic

Recommended Posts

Ellie was "officially" labelled FTT at the doctors yesterday. We saw it comeing, but it was still really upsetting. We're devastated. We don't even know if this gluten-free thing is going to work. It really was just a shot-in-the-dark. If it doesn't work, then we're back at square one only WORSE. Ellies getting worse all the time. Its heartbreaking to see any child go downhill, worse even when its your own.....Is there any other FTT babies here? Ellies 16 months.

Share this post


Link to post
Share on other sites

What a tough label!

I don't know any babies but I'll share this. A woman I've know for about eight years had always been sick. Each time I saw her, she was worse. Two years ago she was on oxygen and really looked like a skeleton. The last time I saw I really thought she wasn't going to make it. Finally she was diagnosed with Celiac and started the diet. I saw her last week and almost didn't recognized her. She looks 20 years younger and was the picture of health. Such an amazing transformation!

I hope that gluten is the issue and you have an amazing turnaround with your little one.

Share this post


Link to post
Share on other sites

Me too. I hope gluten-free is the answer. Try cutting the dairy at least for a few months too to give her time to heal. Soy could also cause problems. Keep her with simple foods as much as possible. Meats, veggies, fruits, nut butters, rice cakes, rice, sweet potatoes and winter squash are excellent and kids usually like them.

Share this post


Link to post
Share on other sites

My daughter was FTT too. It really is just the medical term to say they're not gaining enough weight. That's all it means. It doesn't mean that she's behind or anything. My daughter quickly went back up the charts once we found out that celiac disease was the problem.

I know it is hard to hear but it really isn't as bad as it sounds.

Share this post


Link to post
Share on other sites

Oh I hate that label. My son was label failure to thrive up until two months ago. We are back on the chart even at 3%.

How long has your little one been gluten-free?

My son started gain with much work from us. He can have dairy so we feed him milk shakes with protein milked in it twice a day. Butter goes into everything!

I hope Ellie starts gaining for you. I know how heart breaking it is.

Share this post


Link to post
Share on other sites

My son was failure to thrive and still is..... he has a feeding tube in his stomach. Long story Please look at his jornal on www.caringbridge.org/co/zack..... all I can say is still we are trying to figure out what is going on. You name it and we tried it. Just a long journey for myself and son. We go to the GI doc Oct 29, 2008 and have a test done for villi sence now we can look for it, because he is trying more foods. Gene test was neg, for celiac. But doc says since he never ate before we couldn't find villi. Oh blood test came out positive for celiac sprue (a small perctage). He eat some foods and is on a pre disgested food at night through feeding tube. I've heard my son's jorney to find out what is going on is one in a few? Angie ;)

Share this post


Link to post
Share on other sites

I am praying for Ellie to be healed. May God bless her. ;)

Share this post


Link to post
Share on other sites

My heart goes out to you and Ellie. I hope you find your answers to help her feel better soon. Michael was not FTT but was very low on the weight gain charts. The doctors told me to up his calorie intake as much as possible, this is difficult with diet restrictions and picky eaters, both of which he has/is. I "hid" a lot of things in his regular food! Good luck and I will keep you both in my thoughts!

Share this post


Link to post
Share on other sites

I too have a 29 month old daughter who at 23 months decided she was done eating and starting and fell off the charts - she was 18 lbs at 2 years old. No one knew what was wrong. She is now on a feeding tube and is still not eating enough to live on on her own. We go again on Monday for a Mikey button to be placed in her stomach. We has one test after another done and the only thing we came up with was early warning signs for Celiac disease but she tested negative for all in blood work. This was found in an endoscopy. They will biopsy again on Monday to see if we see any changes but so far gluten free has not changed her in any way and we are 6 months into this thing. So I am still not convinced she has it. She has gained weight and is now on the charts but I feel that is only because of the feeding tube.

I hope things go ok for your daughter and you find a diagnosis for her and if it is Celiac's that she gets better quickly once she is gluten free.

I am using my OT's login right now so I am not sure if I can post my email for you to use or how to send you something personal as I would love to chat with you.

Bonnie

Mom to Genna

Share this post


Link to post
Share on other sites

Please look up this thread http://www.glutenfreeforum.com/index.php?showtopic=19330 and read it all the way through (long thread, I know).

The mom of this baby was an engineer, so she kept charts of everything that her daughter ate AND everything the mom ate, as she was breastfeeding.

She proved to her doctor that foods the baby was sensitive to went through the breastmilk. That child was sensitive to LOTS of foods, AND had multiple issues, but she is doing well now.

Another 2 likely possibilities could be:

1)Vaccine reactions (including mercury toxicity--the flu shot contains thimerosal, as do old stores of vaccines that the doctors might still be using up)

2) Lyme disease (can be transmitted from the mom during pregnancy)

This are admittedly long shots, but in extreme cases like this, you don't want to leave any stone unturned!

Best of luck to all of you.

Share this post


Link to post
Share on other sites

Hi

My DD is 28mths old and weighs about 22lbs :( The dr hasnt labelled her FTT but i feel awful that she is so underweight. She had dairy and soy intolerance, thought may be wheat was a problem so i removed all gluten from her diet about 2 weeks ago. The only issue she had was constipation or watery (not formed) stools and was underweight. Anyway, it has been about 2-3 weeks since i took her off of all gluten and i really dont see much different but i plan to try this for 3mths.

I know how you feel about trying to up the weight. The dr suggested i give her duocal and neocate but i havent started yet because of not having normal stools yet and i dont know if she will tolerate this or not. I have also started to give her more fried food and continuing to add more oil to her foods. I hope we both have better luck with weight gain soon.

Nitu

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • May 29, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • June 01, 2019 Until June 02, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


  • Member Statistics

    • Total Members
      87,371
    • Most Online
      4,125

    Newest Member
    Elliot Rogoff
    Joined
  • Forum Statistics

    • Total Topics
      112,549
    • Total Posts
      958,066
  • Who's Online (See full list)

  • Forum Discussions

    Thank you for all of the suggestions and information.  I will see a lot of the symptoms that I have that I didn't mention listed caused by lack of certain enzymes.  I have blood tests every 3 months. That is when I noticed my cholesterol, etc. not in check.  I eat too many carbohydrates because it causes less diarrhea than a lot of vegetables.  But in talking to 3 of my sisters they are already on medication for the problem.   One has Celiacs the other has Sjorgrens which I also have.  I'm conce
    For the fog and memory, it can be many things, the brain requires certain ratios and amounts of fat to function, it also requires b-vitamins the full spectrum among other amino acids, minerals and vitamins, nerve functions require magnesium, potassium and other things to fire right.  Celiac can hamper the ability to break down and absorb nutrients, digestive issues and enzymes can further complicate this, and trying to eat the right ratios of foods. I supplement with Liquid Health Mega B-compl
    I am interested in your comments about losing your memory.  I have Celiacs and IBS, etc.   Very difficult to eat a healthy diet.  One goes against the other.  The past year I have noticed a marked difference in my memory and was very concerned about it because my mother had Alzheimer's.  I had a brain scan but that is not the problem at least it doesn't show up on the MRI.  All of my blood enzymes are way out of line for my size and I'm thinking it's the diet and inability to do extensive exerci
  • Blog Entries

×
×
  • Create New...