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

New Here And New-ish To Celiac.


missquarejane

Recommended Posts

missquarejane Rookie

hi there everyone, i'm a mom to a fantastic little boy who we believe has celiac... and now after dealing with his symptoms, i am beginning to believe that my daughter also has an issue with wheat.

my son stopped gaining weight around 5 to 6 months old... right around the time that he started eating his first solids. he did not gain more than an ounce a month until he was a year old and had been put on a strict gluten-free diet for 2 months. now at 15 months he weighs what his sister did at 10 months... but for him, this is a major feat.

i am exhausted. i'm frustrated by how little is known out there about celiac unless someone's life is already touched by it. i'm tired of asking if something has wheat in it in a restauraunt and having people brush it off like it is nothing, or worse, they have NO idea at all. i am irritated by how many things for babies contain wheat when there is no good reason to put it in there. (i believe my son was first exposed to wheat by eating an infant snack) ... so BOY am i ever happy i found you all!

thanks for listening to me vent. i promise i will be much nicer from now on! :D


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



Celiac.com Sponsor (A8-M):



shan Contributor

Hiya! at least you found the answer and that he has grown and thrived on the diet! Did you make your whole house gluten free? if not how do you keep him from putting stuff in his mouth?!

TupsGirl Newbie

Hi there,

I just gave birth to a beautiful little girl named Lucy and am anxiously nervously awaiting to see if she has this disease too. I hope she doesn't, but if she does I have learned a lot in the last two years - the same way you have, from others with the same problem. The great thing is besides knowing what the problem is, they are making more and more food options every day and more and more companies and restaurants are labeling their food or making gluten free menus. I went to Disney World last year and cried when they brought out special, warm gluten free rolls for me. The chef came out and spoke to me extensively about my meal options and it was so nice to be able to eat and not worry. If I can be of any assistance. Please let me know.

-Tups Girl

mama2two Enthusiast
hi there everyone, i'm a mom to a fantastic little boy who we believe has celiac... and now after dealing with his symptoms, i am beginning to believe that my daughter also has an issue with wheat.

my son stopped gaining weight around 5 to 6 months old... right around the time that he started eating his first solids. he did not gain more than an ounce a month until he was a year old and had been put on a strict gluten-free diet for 2 months. now at 15 months he weighs what his sister did at 10 months... but for him, this is a major feat.

i am exhausted. i'm frustrated by how little is known out there about celiac unless someone's life is already touched by it. i'm tired of asking if something has wheat in it in a restauraunt and having people brush it off like it is nothing, or worse, they have NO idea at all. i am irritated by how many things for babies contain wheat when there is no good reason to put it in there. (i believe my son was first exposed to wheat by eating an infant snack) ... so BOY am i ever happy i found you all!

thanks for listening to me vent. i promise i will be much nicer from now on! :D

Hi, I hear your frustration and I spend many days frustrated too, my daughter is 5 and has been gluten free since june 07, she has had great response to the diet, we still don't know whether or not she has celiac or not, but I really believe she needs to stay gluten free. I am just hoping that as more people learn about celiac and the ill affects of gluten that more research will be done, more docs will be educated and one day many regular grocery items will be gluten-free. I wanted to share with you 2 new crackers we have discovered, one is a glutino brand cracker, they are "ritz" like and they are good, the other is jo-sef crackers that are like graham crackers, with cinamin and honey, my kids really like them. We have to hang in there educate others and support one another. I am currently trying to find others in my community that are also gluten free, I wish someone would start a support group, but I don't have the time to. Our nearest support group is an hr away, but we are planning to attend the Nov meeting. Good luck with your little ones.

mouth Enthusiast
hi there everyone, i'm a mom to a fantastic little boy who we believe has celiac... and now after dealing with his symptoms, i am beginning to believe that my daughter also has an issue with wheat.

my son stopped gaining weight around 5 to 6 months old... right around the time that he started eating his first solids. he did not gain more than an ounce a month until he was a year old and had been put on a strict gluten-free diet for 2 months. now at 15 months he weighs what his sister did at 10 months... but for him, this is a major feat.

i am exhausted. i'm frustrated by how little is known out there about celiac unless someone's life is already touched by it. i'm tired of asking if something has wheat in it in a restauraunt and having people brush it off like it is nothing, or worse, they have NO idea at all. i am irritated by how many things for babies contain wheat when there is no good reason to put it in there. (i believe my son was first exposed to wheat by eating an infant snack) ... so BOY am i ever happy i found you all!

thanks for listening to me vent. i promise i will be much nicer from now on! :D

GO AHEAD AND VENT WE ALL DO AT SOME TIME OR ANOTHER..

OK HERE ARE THINGS TO LOOK FOR ON THE LABEL..

WHEAT

DUMUM

SEMOLINA

FARINA

TRICUM

RYE

BARLEY

OATS - THIS IS BECASUE THERE IS USUALLY CROSS CONTAMINATION UNLESS U BUY gluten-free.

THESE ARE THE BASICS.. READ THE LABELS CALL THE COMPANIES SEND EMAILS

FIND A ROCK GROUP.

GET SOME BOOKS TO READ

GLUTEN FREE FOR DUMMIES IS A GOOD STARTING POINT I THINK- MY DAUGHTER WAS DIAGNOSED FINALLY IN JANUARY OF THIS YEAR

IT IS VERY TRICKY AND CAN BE VERY EXPENSIVE TO EAT.. BUT STICK TO IT.. THERE ARE SOME FOODS THAT ARE NOT LISTED AS gluten-free BUT CAN BE. JUST CK EVERYTIME YOU BUY IT

MEDICATIONS DO COUNT MAKE SURE THEY ARE SAFE ... HAVE THE DR CALL THE MANUFACTURER AND YOU GET A SAFE LIST MADE.. JUST BECAUSE A BRAND NAME MAY BE GLUTEN FREE DOES NOT MEAN THAT THE GENERIC IS SAFE..

OK I AM OVER LOADING YOU WITH THINGS. IF YOU WANT A BASIC SAFE LIST OF FOODS SEND ME A NOTE.. I AM HERE TO HELP JUST LIKE EVERYBODY ELSE DOES..

VVVVVVVVV GL LYNN

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...