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

Celiacs...(?) Gluten Sensitivity... Custodyand Visitation


celiac custody battle

Recommended Posts

celiac custody battle Newbie

Our six year old was diagnosed with celiacs at three... when our divorce began. She had two positive blood tests and one negative.... no endoscopy... father claims I convinced myself she has something "hard " to diagnose and threat... to get attention presumably... He won... I could not afford a lawyer... he had two. The doctors would not back up the diagnosis... now he has been given sole medical/ legal custody... I can only take her to the doctor in emergencies. He denies she has rash, diarreah, pain in her arms and legs, really bad gas... vomiting.... her stool is seldom firm and the color changes frequently...

I do not have insurrance to have an endoscopy done on myself...but I have had the same symptoms all my life... Not eating gluten is the only thing that works to make me feel completely fine... in fact I feel great and full of energy when I abstain...!

We live in a small town... medical care (and family law) here is really backward... I don't know what to do for my daughter... Her father would not admit that she had symptoms before, which I do not understand, he certainly will not now... My credibility was questioned but no proof was offered, only inuendo that I had pressed the doctor and had taken the child to the doctor "more than usual." The custody order actually said it was just too hard to maintain a gluten free diet... and that he now has control over her third party notification regarding diet restrictions... This decision is harmful to our daugjters' health... but I am barred from helping her... by law... without good reason...I am intimidated by him, all the lawyers, doctors, judges... He tried to accuse me of child abuse for not feeding her gluten. Someone help... please


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Are there free attorneys through family court?

Do you have copies of her medical records and lab reports? What was submitted to the court to support the dx and what did the doctors say to retract their dx? Who said the diet is too difficult to maintain? the judge or a doctor?

I'd get SCIENTIFIC articles - easy to read and succinct, and take all of them (records, articles) to a lawyer, law clinic.

If all else fails what about Child Welfare or whoever it is you report child abuse to?

xjrosie Apprentice

Our six year old was diagnosed with celiacs at three... when our divorce began. She had two positive blood tests and one negative.... no endoscopy... father claims I convinced myself she has something "hard " to diagnose and threat... to get attention presumably... He won... I could not afford a lawyer... he had two. The doctors would not back up the diagnosis... now he has been given sole medical/ legal custody... I can only take her to the doctor in emergencies. He denies she has rash, diarreah, pain in her arms and legs, really bad gas... vomiting.... her stool is seldom firm and the color changes frequently...

I do not have insurrance to have an endoscopy done on myself...but I have had the same symptoms all my life... Not eating gluten is the only thing that works to make me feel completely fine... in fact I feel great and full of energy when I abstain...!

We live in a small town... medical care (and family law) here is really backward... I don't know what to do for my daughter... Her father would not admit that she had symptoms before, which I do not understand, he certainly will not now... My credibility was questioned but no proof was offered, only inuendo that I had pressed the doctor and had taken the child to the doctor "more than usual." The custody order actually said it was just too hard to maintain a gluten free diet... and that he now has control over her third party notification regarding diet restrictions... This decision is harmful to our daugjters' health... but I am barred from helping her... by law... without good reason...I am intimidated by him, all the lawyers, doctors, judges... He tried to accuse me of child abuse for not feeding her gluten. Someone help... please

First, document EVERYTHING. Take pictures, make a log, recordings...anything to keep records of her symptoms. Gather all the doctor's files you have in regard to her positive blood tests. Yes, take pictures of her poop. Date everything.

Then, contact the free legal office in your area. If they won't help, start contacting every family lawyer to plead for them to help you pro bono.

Good luck

Di2011 Enthusiast

Just for a few moments I want you to leave the divorce and legal proceedings aside. I'll get back to that crap later :(

When did your daughter start having problems with her health? How did it present?

What lead you to getting celiac testing? What specific testing did she have and when?

What specific symptoms does your daughter suffer - details/timings/severity? And how did you (or doc???) link this to gluten as opposed to other culprits?

Archived

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

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

    • Total Members
      133,201
    • Most Online (within 30 mins)
      7,748

    Karen LK
    Newest Member
    Karen LK
    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

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.