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

So Frustrated


strawberrygm

Recommended Posts

strawberrygm Enthusiast

my daughter is 10 and was diagnosed last summer.

i thought we were doing so good keeping her gluten-free and she is feeling much better and has gained some weight, but she is still bone thin and tired all the time.

she just had her first period last month.

i thought maybe her tiredness was not from celiac so much as her age and bodily changes, etc.

but just today, i was sitting her eating a trail mix that she and i love. all of a sudden i noticed it said in the allergy warning it had wheat. i had never even thought to check the warnings on the bag because nothing in it would make you think it would have wheat in it. it has chocolate chips, white chocolate chips, peanut butter chips, nuts, raisins and cranberries. it is by sam's choice, called indulgent trail mix.

i read through the ingredients and still do not know where the wheat is coming from, but there in the warning box, wheat is listed. uggghh.

i could just kick myself.

no telling where else i am missing it in. i must admit i dont check everything, only the things i think may have gluten in them and the things i have been warned to look at, such as fries, ketchups, dressings, bbq sauces. things like trail mix with no cereals....no, i dont think to check them. i will now!

i feel like i am failing her. almost a year later and i am missing stuff!!

i havent had her levels rechecked, and dont want to now. not that her doc has mentioned it or anything, i just seen it mentioned in here several times.

its so hard to keep her able to eat the same as her friends, especially in podunk where there is no health food stores to be found in a 2 hour radious!!!!

i am just mad and disgusted at myself and the world for putting flippin gluten in everything! even shampoo?!?! why on earth?? its a conspiracy, a cruel cruel joke!!!


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



Celiac.com Sponsor (A8-M):



aorona Rookie

It is frustrating. You have to be in the mode of i am going to live a gluten free lifestyle. You have to read all labels of everything from lotion to every food your daughter may eat. and you have to read the labels every time you buy something. Me and my kids have been gluten free for about 4 years now, and we have had some mishaps now and then. It is going to happen, and you just have to be vigilant. Teach your daughter how to read labels, so she can participate in choosing what she wants to eat. My oldest son is almost 8 years old, and has been gluten free since he was 4. He now knows how to read labels and check for hidden ingredients containing gluten. He even went to the store with my dad and helped pick out several things to eat that were in fact gluten free. Involving your daughter will give her more of a sense of control. Then you don't have to worry about her ingesting gluten at school or other activities because she will know what to look for. Also cross contamination is a big issue. Also, I know the feeling of not being able to get what you want at the grocery store. Talk to your grocery store manager and see if they can special order things for you, most of the time if you live in a small town, they are happy to accomodate you. There is also the internet to buy from. Also, buy a recipe book and try making things yourself.

mushroom Proficient

Don't feel bad. I had been buying a particular brand of chicken stock cubes which were both gluten and soy free. Then they came out with a powdered stock in a tin and it was in the gluten free section and I bought it because it's easier than cubes to get the right amount. So of course I didn't check the label and couldn't figure out why I have been itching like crazy lately. They put soy in the powder for some reason!! Dirty rotters. You can't ever let your guard down!

Archived

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

  • 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. - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    2. - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - Theresa2407 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    4. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    5. - Scott Adams replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,263
    • Most Online (within 30 mins)
      7,748

    Fruitypebbles
    Newest Member
    Fruitypebbles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
×
×
  • 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.