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

8-Year Old With Celiac Disease .. No Idea Where To Go Next

Mom2CjJaedonEthan

Recommended Posts

Mom2CjJaedonEthan Newbie
Mom2CjJaedonEthan
Posted

My 8-year-old son was diagnosed with Celiac Disease back in February 2007. The doctor ran blood tests and his nurse called to inform me that the tests came back positive. That is all they did. No further information was provided in regards to the "what next."

My sister was diagnosed a few months before my son, and when her blood tests came back positive they performed an endoscopy on her. She has been insisting that I need to get after my son's physician to get further testing, but no matter how many times I insist he ignores me.

Any suggestions???

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

You need a new doctor.

Roda Rising Star
Roda
Posted

He is already diagnosed celiac by blood work so I would continue to keep him gluten free or put him gluten free if he isn't already. I agree you need a new doctor as they should have given you some direction. If he hasn't been gluten free you could always request the full celiac panel: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG DGP( deamidated gliadin peptide antibody) and request a scope with biopsy. They must take a minimum of 6-8, some references are now saying 8-11 biopsy samples from the small bowel. If you want to redo this have it done while he is still consuming gluten. If he is already gluten free then he would have to go back on gluten, eating appx. the equivilent of 2-3 slices of bread a day, for three months.

Darn210 Enthusiast
Darn210
Posted

Did you take him gluten free at that point? What doctor has he seen (for anything) since he was diagnosed?

SilverSlipper Contributor
SilverSlipper
Posted

Hi Mom2CjJaedonEthan,

Have you taken him gluten free? If so, that's great! If not, the parents here are so knowledgeable and can help you through that process. Can you get a referral to a pediatric gastroenterologist?

All the best...

come dance with me Enthusiast
come dance with me
Posted

My 8yo was diagnosed by blood test and I took her off gluten from then without anything else happening. I wouldn't agree to anything invasive for her because the end reult is the same = a gluten free diet for life.

mommyto2kids Collaborator
mommyto2kids
Posted

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?

One poster said you need many for an accurate diagnosis. Someone please explain.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?

One poster said you need many for an accurate diagnosis. Someone please explain.

I'd say if you only had one sample done and it showed up positive then in a weird way consider yourself lucky it showed in that sample. Doing multiple biopsies just helps get a more accurate test since damage can be patchy.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748
    maltawildcat
    Newest Member
    maltawildcat
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.