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

We Can See Improvement!


chrissy

Recommended Posts

chrissy Collaborator

i know i said that my girls didn't really have symptoms, so it was going to be hard to tell if we were doing the diet right. what was i thinking----one of my twins has been nauseated for about 3 months. i don't know how many times she came to me in tears because she felt so lousy, or i had to pick her up from school. yesterday i asked her if she was starting to feel better and she said YES!!!! i guess i didn't think it was caused by celiac because it started the week she had an endo and biopsy (for bad reflux). at the time we didn't have any reason to suspect celiac in ANY of our kids, so the doctor wasn't looking for it. she had esophageal thrush, but the nausea just never went away after treatment.. i also have asked my 10 year old with the leg pains if she is still having trouble and she said she hasn't noticed---so it must be improving.(i hope) my other twin with the rashes and depression does not seem to be improving yet. i worry about her because she looks sick, is very thin, always cold and guite often has blue lips.

christine


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I'm so glad some of your kids are feeling better.

Your daughter's blue lips worries me. What has her doctor said about that? It sounds like it may be a symptom of something more related to blood circulation or the lungs maybe? I think I've heard that sometimes it's a symptoms of anemia. Has she been tested for anemia lately?

dlp252 Apprentice

Yay, improvement is really good.

chrissy Collaborator

we haven't talked to the doctor about her blue lips----it only seems tohappen if she is cold, but she is cold so much of the time........her iron was checked the same day her blood was drawn for the celiac screen---she is not anemic. we will be seeing the ped gi with all three girls next week----i guess i better start writing down everything i need to ask since my brain is like a sieve.

christine

elfkin Contributor

Do I understand correctly that you said your daughter was having leg pain? We have been mystified by my daughters health for several months now. She has complained unceasingly of "growing pains" in her joints. Behind her knees is bad, her neck hurts, her arms, etc. Then she started saying her stomach hurt all the time. It go so bad that she was laying around a lot, pale and listless. My son has confirmed celiac, but I hadn't really suspected her until she had a weird incident around Christmas. She went to a party, ate cookies and ended up in the hospital that night. She only threw up twice during the whole escipade, but she was kept all night and given an IV, they checked all kinds of stuff, but couldn't find anything. Since then, we decided to take her off gluten and see what happened. It has been over two weeks now. Her daily complaints about stomach and joints ceased by day 3! She has been feeling better and better. I guess she has it too. She is six. I wondered if joint pain was a typical symptom. Then, my son (he is two and a half), was glutened last night. We were at a family function and he was somehow contaminated by a little cousin with a grilled cheese! He woke up at midnight crying, itching, screaming, gas, and runny diapers. When he calmed down a bit, he told me his knees hurt! He went on and on about it. He has never done that before. Is leg pain a common problem? Just wondered. . .

chrissy Collaborator

i pretty new at this, so i don't know if it is common or not. molly has complained about her legs for quite awhile. usually she says they feel numb, but i think she is having a hard time giving me a good description of what she is feeling. she also has complained about stomach aches off and on. someone else on the board--can't remember who--told me that they got those same kind of leg symptoms.

christine

deb.h. Rookie

[ My Daughter used to always complain of leg pains in her shin bones but I am tryingto think if she has done that since going gluten free in September and I don't thinnk she has. she no longer feels nausetated all the time. she has no more problems breathing. i am beginning to think that the breathing was from bloating and not necessarily asthma or something like that. good skin. Lots of energy and happy. Oh yeah all three of my girls grew aobut half and inch in the first month!!!! It is amazing the havoc gluten can wreak on a body. Deb


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



Celiac.com Sponsor (A8-M):



TCA Contributor

I am a nursing mom and I went on a gluten-free diet in September to treat my daughter's horrible GI issues, which I suspected to be celiac. She has improved tremendously. We have no history of celiac in the family, but a lot of people with possible symptoms on both sides of the family. I was suspecting my husband was the gene carrier because he and his brother are Type 1 diabetics. I now think it may come from me. I have had terrible joint pain all of my life. I would wake up screaming with "growing pains" as a child. I was tested for RA and no one could figure out why I was hurting, so I just learned to live with it. Since I went on the gluten-free diet for my daughter, the pains are gone!!!! I couldn't believe it. It's the first time in 29 years I haven't had to deal with it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,566
    • Most Online (within 30 mins)
      7,748

    Rrenee2990
    Newest Member
    Rrenee2990
    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

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • 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.
×
×
  • 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.