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

I'm Discouraged... Need Some Advice

peetred

Recommended Posts

peetred Rookie
peetred
Posted

We have been as gluten free as possible now for a few weeks. That being said DH and I have made mistakes and it also seems that no matter where we go someone tries to give my 2 year old food. It doesn't help that DS tries to sneak food when I tell him he can't have any, even if I have his own food. He wants what everyone else is eating and he doesn't understand. I feel that we aren't going to see as clear of results as we need to see if we can't have him totally gluten free, but I feel alienated from situations b/c I have to be so picky about my son's food...

The worst part is I can't say for sure if he has Celiacs or not. Blood tests are negative... DH and I are seriously thinking of ordering tests from that laboratory online just so we know for sure. I feel dumb when I don't know for sure.. otherwise I'd probably have allergy information for him to wear or something and I could be pushy to people about his food b/c it's a true disease. Right now I just feel stuck in the middle and not able to say for sure.

Also, does anyone have extra advice for a 2 year old with Celiacs out in public settings. I feel like I have to have eyes on him at all times so someone doesn't give him something he can't have. People just don't ask the parents, you know?

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

Celiac.com Sponsor (A8-M):


cyberprof Enthusiast
cyberprof
Posted
We have been as gluten free as possible now for a few weeks. That being said DH and I have made mistakes and it also seems that no matter where we go someone tries to give my 2 year old food. It doesn't help that DS tries to sneak food when I tell him he can't have any, even if I have his own food. He wants what everyone else is eating and he doesn't understand. I feel that we aren't going to see as clear of results as we need to see if we can't have him totally gluten free, but I feel alienated from situations b/c I have to be so picky about my son's food...

The worst part is I can't say for sure if he has Celiacs or not. Blood tests are negative... DH and I are seriously thinking of ordering tests from that laboratory online just so we know for sure. I feel dumb when I don't know for sure.. otherwise I'd probably have allergy information for him to wear or something and I could be pushy to people about his food b/c it's a true disease. Right now I just feel stuck in the middle and not able to say for sure.

Also, does anyone have extra advice for a 2 year old with Celiacs out in public settings. I feel like I have to have eyes on him at all times so someone doesn't give him something he can't have. People just don't ask the parents, you know?

I don't have solutions for you about people offering him food etc. but I would say that if it would help you feel better or stronger, then by all means have the Enterolab testing done. I was skeptical about it (only because the work has not been scholarly reviewed/peer reviewed) but we did it for my son because he didn't want to try the diet without proof that he needed it. So, you are having the same doubts and Enterolab does give good info, especially when you have the gene test done too.

Best of luck.

~Laura

Ridgewalker Contributor
Ridgewalker
Posted

I have seen some really neat kids' t-shirts on the Web that say things like:

"Don't feed me! I have allergies."

or specific ones, like:

"I'm allergic to dairy!"

etc...

Here's a link to some gluten-free shirts and pins: Open Original Shared Link

If you're crafty, you could make your own with a plain t-shirt, stencils, and fabric paint.

okgrace Apprentice
okgrace
Posted

Unfortunately I think we do have to be pushy and make everybody aware and keep our eyes on them in publlic places. I found it really hard around the holidays because our family didn't get it yet and kept trying to give her stuff and plus she was reaching for things. dd is four so she understands now and is very good about telling people about her many allergies when food is offered.

My husband and I both eat gluten-free when we are home so she doesn't feel different and there is nothing else to want. It's just easier for us and I think it has made it easier for her to accept. To keep the cost down we eat mostly meat, veggies and a grain in some sort of dish instead of buying specialty prepackaged food that is more expensive. At first is seemed like a lot more work but it's not a big deal now. I also discovered that I am gluten intolerant through this process. I would never have guessed that it affected me as well.

Good Luck to you!

Darn210 Enthusiast
Darn210
Posted
I have seen some really neat kids' t-shirts on the Web that say things like:

"Don't feed me! I have allergies."

or specific ones, like:

"I'm allergic to dairy!"

etc...

Here's a link to some gluten-free shirts and pins: Open Original Shared Link

If you're crafty, you could make your own with a plain t-shirt, stencils, and fabric paint.

I was going to suggest the T-shirts, too. The also have stickers that say the same thing.

As far as telling other people without having a diagnosis . . . I would just say that you suspect a problem with gluten and you are in the midst of a food trial and to not give him anything to eat (that doesn't come from you) or it will invalidate the test. (Makes it sound kinda official, huh?? :lol: ) Say it with confidence and let them know that they will cause a setback in your trial and possibly making your child ill!! . . . you may not have a diagnosis at this time, but I would tell them that the trial diet is part of the diagnostic process. Lots of intolerances can't be medically tested for. . . and for those, it's trial and error.

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. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    2. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      What exactly are you taking from doterra?
    4. Xravith
      - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac specialist...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,460
    • Most Online (within 30 mins)
      7,748
    Jujuzinha
    Newest Member
    Jujuzinha
    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

    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      What exactly are you taking from doterra? 
    • Xravith
      Challenges eating gluten before biopsy

      By Xravith · Posted

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac  specialist " Dr Fernandez-Becker who down played my ailments and stated im not and then yes I am I even had one her " care team" ask my why do you want that diagnosis. UNMMMMM. I don't want it, its been my life confirmed in 1994.Menopause intensified extra sensitivity and medical has down played my sibo, ibs, CELIAC, now im having skin and eye issues. I thought help was available but its been a complete medical disaster. 
×
×
  • 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.