Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Upset And Need Advice


Rucko

Recommended Posts

Rucko Apprentice

Hello. I'm posting here because I'm upset over a doctor's lack of awareness.

I was diagnosed with celiac a year ago. My son and daughter both were told to get the blood test; my son's test came back negative but my daughter found out she is also celiac.

However, it's my son's little boy, Joe that I'm concerned about. Joe has just turned two and has had a difficult time with asthma for this last year and is now on two kinds of steroids. He has also had numerous severe respiratory infections which needed to be treated with antibiotics.

Yesterday I asked my daughter-in-law if he has been tested for celiac, but the answer was no. Apparently their doctor thinks that my grandson doesn't need to be tested because he's not displaying 'failure to thrive'.

I thought that people with an autoimmune disease were supposed to get tested for celiac anyway, especially if they have relatives with it?


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

This type of situation always upsets me! I have a nephew and niece whose pediatrician believes the same thing, and all the while they are suffering from numerous symptoms of celiac. My mother, uncle, son, daughter, and I all have celiac, but the pediatrician my brother takes his children to appears to be completely ignorant about celiac. I would suggest that your son change pediatricians--he/she obviously does NOT understand very much about celiac disease. You are an admirable advocate for your grandson.

Marlie Apprentice

This type of situation always upsets me! I have a nephew and niece whose pediatrician believes the same thing, and all the while they are suffering from numerous symptoms of celiac. My mother, uncle, son, daughter, and I all have celiac, but the pediatrician my brother takes his children to appears to be completely ignorant about celiac. I would suggest that your son change pediatricians--he/she obviously does NOT understand very much about celiac disease. You are an admirable advocate for your grandson.

Doctor's have not said a word to me about getting family tested but I do know it is supposed to be done. Too many doctors are very ignorant when it comes to Celiac Disease. It's quite a shame.

Rucko Apprentice

Doctor's have not said a word to me about getting family tested but I do know it is supposed to be done. Too many doctors are very ignorant when it comes to Celiac Disease. It's quite a shame.

We were told that first degree relatives should definitely be tested, but I've heard that some doctors recommend that second degree relatives also be checked. What amazes me is not many doctors think of testing people with another autoimmune disease; they're told to test diabetics but just ignore all the folks who are hypothyroid, asthmatic, etc. even though there are strong links to celiac disease.

Now if I could only convince my brothers to be tested - one has ankylosing spondylitis and the other has T-cell lymphoma. But they're adults and can do what they want; it's their funeral. My grandson though, could have a much better time of it if they find out he's celiac early on. And if he's not, that's good to know too. I'm just appalled at the mind-set of the doctors who expects to see the so-called 'classic' symptoms in kids.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BoiseNic posted a topic in Dermatitis Herpetiformis
      0

      Skinesa

    2. - Wheatwacked replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins

    3. - trents replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins

    4. - llisa replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins

    5. - trents replied to llisa's topic in Gluten-Free Foods, Products, Shopping & Medications
      20

      Gluten free vitamins


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,236
    • Most Online (within 30 mins)
      7,748

    Denise Gunn
    Newest Member
    Denise Gunn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BoiseNic
      Anyone try this? No matter what the brand, probiotics have ALWAYS made me break out bad. I am hesitant to try this simply for that fact, but I ordered a 3 month supply. Any input would be appreciated. Wish me luck.
    • Wheatwacked
      @llisa, I am curious to know how much vitamin D you are taking and what is your plasma level in nmol/L or ng/ml what the doctor's target 25(OH)D is. Hopefully with the gluten free diet you'll be able to feel better.
    • trents
      Yes, but if you had been avoiding bread because of the stricture, that might explain the negative result of the previous celiac antibody test.
    • llisa
      Hashimoto diagnosed over 20 years ago after my daughter was diagnosed and told me to get checked due to similar symptoms. Diabetes diagnosed same time. Exocrine pancreatic insufficiency this past summer. Celiac last Wednesday. Have been having the digestive issues for a couple of years, several doctors--thought we had it solved with the Creon. Then symptoms got worse. I have a theory about that. I have a stricture in my esophagus that has to be dilated every 6-8 months. When it is tight, I have trouble swallowing. Bread is one of the harder things to swallow, so I avoid it. Had the stricture stretched end of October and started eating bread again. That's about when the diarrhea, bloating, gas, and pain started getting worse. Went in for another upper endoscopy and dilation of stricture last week. (It had been so tight this time, he scheduled a second dilation one month after the first.)  I told him how miserable I'd been, and he did the small intestine biopsy. I know they did the blood test for celiac about a year or more ago trying to find source of my problems,  and it was negative.
    • trents
      Diabetes and Hashimoto's as well, huh? You are the epitome of the autoimmune cascade effect. That is, once you get one autoimmune condition you tend to develop others. But I am curious. In the sequence of these several autoimmune diagnoses, where did the celiac diagnosis come? You certainly have a lot of health issues to juggle.
×
×
  • Create New...