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

testing was negative. can this change?

kim5798
 Share

Recommended Posts

kim5798 Newbie
kim5798
Posted

Asking this question for a friend.  Her child has type 1 diabetes, diagnosed 2 years ago. At that time, they did the celiac blood tests & they were negative. Her son has various stomach issues & she is wondering if they could be celiac related. The nurse at the endocrinologist told her, "the tests were negative 2 years ago, he doesn't need to be tested ever again." My own child has type 1 diabetes and celiac disease & this did not seem correct to me. Can't the celiac disease develop over time??  

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Celiac disease can develop at anytime.  TD1 patients have a 10% chance of developing celiac disease.  This child should be retested.  My own kid gets tested every few years.  I would do it sooner if she had symptoms (and some celiacs are symptom free!)

Your friend should request a complete celiac panel and do it nicely in writing.  Doctors just hate malpractice lawsuits.  The other choice is to get a PED or PCP  to order the panel.  This ENDO is not celiac-savvy.  I would worry about anything he does.  My neighbor is an ER doc.  He can not know everything, but he uses Dr. Google, consults with peers and relies on his training.  

  • 2 weeks later...
kim5798 Newbie
kim5798
Posted
  • Author

This is what I told my friend. Thanks for the input.

HannahBick Explorer
HannahBick
Posted

Many people can have some of the signs and symptoms of celiac disease, but not have celiac disease at the time of testing and then if you wait long enough they get celiac disease later on.

frieze Community Regular
frieze
Posted
On 6/5/2018 at 12:13 AM, kim5798 said:

Asking this question for a friend.  Her child has type 1 diabetes, diagnosed 2 years ago. At that time, they did the celiac blood tests & they were negative. Her son has various stomach issues & she is wondering if they could be celiac related. The nurse at the endocrinologist told her, "the tests were negative 2 years ago, he doesn't need to be tested ever again." My own child has type 1 diabetes and celiac disease & this did not seem correct to me. Can't the celiac disease develop over time??  

find out if that person is a nurse, if he/she is, report them to the board for malpractice.  i DO NOT mess around.

kareng Grand Master
kareng
Posted

Of course that is ridiculous! That is like saying you had a mammogram 2 years ago that was negative - so you couldn't have cancer now.  Of course she then talked to the doctor and got her tested?  

The standard of care for children with type 1 is to Celiac test every 2 years with no symptoms.  And to test all siblings every 2 years, also.  

Palvyre Apprentice
Palvyre
Posted

I had symptoms from my early 20s on. I was tested in my late 20s due to symptoms consistent with Celiac and the test was negative. I was tested again at age 38 because I had gotten extremely ill, that time it was a very high positive. I had developed osteoporosis by that point though.

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

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,018
    • Most Online (within 30 mins)
      7,748
    Laney71
    Newest Member
    Laney71
    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)

  • 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.