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- Just Got A Diagnosis

ashleyld

Recommended Posts

ashleyld Rookie
ashleyld
Posted

Hi, i just got the phone call yesterday from my daughters Ped Gi. all her blood tests point to Celiac disease. next step is an endoscopy. I guess i just need to know we are not alone and changing my entire families life wont be horrible. 

thanks for your help and words of encouragement.

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

Celiac.com Sponsor (A8-M):


ashleyld Rookie
ashleyld
Posted
  • Author

also should i be letting her play with playdoh? She doesnt eat it.. but could it hurt her?

kareng Grand Master
kareng
Posted

also should i be letting her play with playdoh? She doesnt eat it.. but could it hurt her?

 

 

She needs to keep eating gluten until all her testing is finished (including the endo).  I wouldn't use Playdoh because it gets under your nails and all over.  Too easy to accidentally get some on my mouth.  There are gluten-free brands.

ashleyld Rookie
ashleyld
Posted
  • Author

She needs to keep eating gluten until all her testing is finished (including the endo).  I wouldn't use Playdoh because it gets under your nails and all over.  Too easy to accidentally get some on my mouth.  There are gluten-free brands.

Thank you! I didnt realize there were gluten free brands! I will keep a look out. Her favorite thing in the world right now is playdoh. I dont know how i could take that away!

mamaw Community Regular
mamaw
Posted

aroma dough is gluten-free;;;;;; soy  yer dough  (modeling clay)  is gluten-free....

There  are  many others....

The adventures  of a gluten free  mom blog  has  a  review of  gluten-free  play doughs.... I tried to  copy & paste  but  it  wouldn't let me....

 

If  she  is  school age  please  make contact  with  the  school in regards  to  celiac....

 

Keep  her  eating  gluten until all testing  is  complete......

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

Don't forget to get the rest of the family tested as celiac disease tends to run in families. If everyone tests negative, and they continue to eat gluten, they should be retested every couple of years or as soon as symptoms appear.

 

Good luck with the endoscopy.  Make sure they take at least 6 biopsy samples.

Cara in Boston Enthusiast
Cara in Boston
Posted

Any change is hard until you get the hang of it.  We have been gluten-free for almost three years now and it is like second nature.  I do recall, in the first few weeks, we were eating tacos about 3 times a week because I didn't think I could come up with any gluten-free meal ideas.  Seems silly now.

 

You, your husband, and your other children need to be tested as well - even if you don't have any symptoms.

 

See if there is a Celiac Support Group in your area.  Ours was wonderful and sent my son a big box of gluten-free treats to "welcome" him.  He felt very special.

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

Celiac.com Sponsor (A8-M):


ashleyld Rookie
ashleyld
Posted
  • Author

Thank you guys! Yesterday i had the worst anxiety about all this. But i feel better now. 

I know i need to keep her eating gluten until after the test. I am going to get at least myself and my middle daughter tested, but for the ease of it.. it will be my entire on the diet. its too hard to single out one person.

Thank you for the blog, im going to go google that now, and i am going to see if there is a group around here! Thanks!

frieze Community Regular
frieze
Posted

if you take your entire family gluten free you are lowering the window on testing.  get every one tested now.

ashleyld Rookie
ashleyld
Posted
  • Author

if you take your entire family gluten free you are lowering the window on testing.  get every one tested now.

I have to wait until after she gets the endoscopy before i get remove gluten. I will Def get myself and my middle daughter's blood drawn before the gluten is out. :D

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):

  • 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.