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

My Daughter Is Now Much More Symptomatic After 2 Years On The gluten-free Diet And Its Breaking My Heart


Guest AutumnE

Recommended Posts

Guest AutumnE

I had severe symptoms and gluten-free was my answer, my daughter and husband went on it by default and a little rash she used to get here and there went away unless she was accidentally glutened.

2 years on the diet leaves a horrible reaction for her now. Explosive diarrhea, stomach cramps for days and a rash completely covering her butt area.

It is really making me question what I did. I know in my head that Im hopefully saving her from all the autoimmune diseases I have by starting at an early age but it breaks my heart that when she gets cc by being at gluten filled homes. I bring all of her food, all of her silverware and paper towels and drinks but once in a while she still gets glutened. I feel so bad for her at 4 years old to have to deal with these bad intestinal issues knowing that I made her more sensitive to it by putting her on the diet :( The mommy guilt I am feeling is horrid......


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



Celiac.com Sponsor (A8-M):



home-based-mom Contributor
I had severe symptoms and gluten-free was my answer, my daughter and husband went on it by default and a little rash she used to get here and there went away unless she was accidentally glutened.

2 years on the diet leaves a horrible reaction for her now. Explosive diarrhea, stomach cramps for days and a rash completely covering her butt area.

It is really making me question what I did. I know in my head that Im hopefully saving her from all the autoimmune diseases I have by starting at an early age but it breaks my heart that when she gets cc by being at gluten filled homes. I bring all of her food, all of her silverware and paper towels and drinks but once in a while she still gets glutened. I feel so bad for her at 4 years old to have to deal with these bad intestinal issues knowing that I made her more sensitive to it by putting her on the diet :( The mommy guilt I am feeling is horrid......

There is nothing quite like a mother's guilt trip, is there? :wub:

Anyway, you have done the right thing by taking her off gluten. How do I know? Because if her body did not have a problem with it, there would be no reaction at all whenever she ate it. The fact that she has a reaction just proves the wisdom of what you did two years ago.

Guest AutumnE

Thank you

I know in my head I did the right thing now if I can just wrap my heart around it. I cry with her when she has her accidents that embarass her so badly. I never hated celiac disease/gluten intolerance before with me but I do now that it hurts my baby :angry:

amylouise Rookie

hey i had the same problem - my original symptoms were just oesophagus swelling and acid reflux but now when i get glutened i have sooo many more syptoms like constipation, fatigue, nausea, headaches, runny nose etc as well as the original symptoms! i think you did the right thing taking your girl off gluten! xxx

taweavmo3 Enthusiast

The severe reaction shows that you most definately did the right thing. My daughter never had the classic GI symptoms before diagnosis, but she was very malnourished. Now, she does get very ill.....vomiting, diarrhea, high fevers and lethargic for weeks. She is absolutely miserable, but these bad reactions have also helped her realize how important it is to stay away from gluten. It is hard to watch her suffer, but I know I won't really have to worry about her straying from the diet when she is older. So, it does have a positive side.

I would of course rather my child be 100% healthy and not have any issues, but in all honesty...if I could hand pick a disease for my child to have, it would be Celiac. It's totally controlled by diet, usually leads to a healthier lifestyle for the whole family, and if caught early on, it can actually ward off a slew of adult problems. So all in all, after you get past the difficult beginning stages, it really can be a blessing.

Don't feel guilty...you absolutely did the best thing for your child!!!!!!!!!

Jestgar Rising Star
I feel so bad for her at 4 years old to have to deal with these bad intestinal issues knowing that I made her more sensitive to it by putting her on the diet :(

You don't know this. She may have become this sensitive no matter what. What you absolutely DID do was save her two years of damage and misery.

Juliet Newbie

"She may have become this sensitive no matter what. What you absolutely DID do was save her two years of damage and misery."

Couldn't have said this better myself! You have no reason to feel guilty, even IF her "visible" symptoms would have been less had you not taken her off of gluten. It's the "invisible" damage that's worse. No matter what she may be going through now, she is far better off and lucky to have a mother like you.


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



Celiac.com Sponsor (A8-M):



Guest AutumnE

Thank you :)

I do feel better now, at the time I posted she had just finished having diarrhea from it along with a rash so it was hitting me hard. Thankfully we have a lot of family support since my mom, sister and my sister's kids have it also so it makes holiday dinners easier for our family and she feels normal since many of her cousins cant eat it either.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,564
    • Most Online (within 30 mins)
      7,748

    Anne65
    Newest Member
    Anne65
    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

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.