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

Update On Maddie

KayJay

Recommended Posts

KayJay Enthusiast
KayJay
Posted

Just wanted to update you all on Maddie. She is doing great! We saw the GI yesterday and she hit a growth spurt last week I think. She shot up in height and gained a little over a pound in 4 months. :D She is about to be 1 in two weeks and so we are doing a milk challenge this week. I am to give her one bottle of milk-based formula every morning for a week. If she does fine on that she can move to whole milk. I gave it to her today and she did great! I couldn't believe it! I guess tomorrow will be a bigger challenge.

He also said as far as Celiac goes we can start her on Wheat once we figure out the milk issue. He said it is up to us but at this time keeping her off Wheat will not hurt her or help her. Meaning if she is going to get Celiac she will get it But it is up to us as to when we want to introduce Wheat. I just wanted to pass that info on because I know several of you are in the same situation as we are. He said at one their intestines should be healed and sealed like an adult so wheat should be safe now as far as Celiac and all that goes. Now we just wait and see what happens. But so far everything looks great! I was so happy to hear all of that :D

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

Celiac.com Sponsor (A8-M):


mn farm gal Apprentice
mn farm gal
Posted

Has she been diagonosed Celiac? And if so why would they tell you to put her back on wheat? I am new here and this is just confusing me. Sorry

imsohungry Collaborator
imsohungry
Posted

Kayjay,

I am so glad Maddie is responding well to the milk-based formula introduction! :) She has grown a pound and gotten longer?! Yay! :) Was she having a problem gaining weight (or failure to thrive)? What did they attribute it to? I hope she continues to respond well to her dietary change...she sure is a cute litte girl :P She looks like a happy baby! Take Care. -Julie

KayJay Enthusiast
KayJay
Posted
  • Author

Sorry I will fill you in on the details...

I have Celiac and so no gluten for a year was the doctors orders with Celiac being in the family we just weren't sure. Since day one Maddie has bad reflux and then at 5 months we found out she either had an intolerance or allergy to milk and soy and sweet potatoes. My dh is allergic to peanuts so with both of our genes the doctor was a little cautious her first year until her intestines healed better. She couldn't have any solid foods until she was 8.5 months. She got very very sick with both milk and soy so I am very surprise that she can tolerate okay so far. It is amazing to me. I am scared to introduce wheat but I don't see why not at this point. No reason to deprive her you know?

As far as her growing she started out in the 50% in everything and is now down to 5%. She stopped growing all together for a few months and then suddenly grew last week. My mom said I was the same way. :rolleyes:

The doctor thought she could have intolerance to milk and soy and if that was the case they would go away at a year. If it is an allergy it wouldn't. So right now it looks like an intolerance. But again it is still too soon to know for sure. She was up quite a bit last night not sure if this is all related or not. <_<

TCA Contributor
TCA
Posted

So glad she's doing well! Good luck on the food trials!

schuyler Apprentice
schuyler
Posted

I'm so happy that she's doing well.

She is a beautiful little girl, and she looks so happy.

Good luck with the food trials.

imsohungry Collaborator
imsohungry
Posted

Thanks for filling me in on the details. I'm so glad to hear that she is finally growing! I know you are a relieved mommy. :) Keep us updated! -Julie

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

Celiac.com Sponsor (A8-M):


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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.