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

How Did You Get To A Dx Of Celiac For Your Child?


mythreesuns

Recommended Posts

mythreesuns Contributor

I'm in the process of a gluten-free trial myself for my own issues, but now I'm concerned about my son. He's had chronic diarrhea for more than a year, he went through a period of time where he was sick (throwing up) frequently (a couple of times a month without other obvious sickness) and he was tired a lot and his head hurt.

He went through a multitude of tests and through several channels we discovered that his ANAs came up high on his blood tests and he did get dx's of OCD and Tourette's from his developmental pediatrician.

Well, after what I went through/am going through, I decided to get him tested as well, but I wasn't sure how to go about it. For me, the blood tests and the biopsies came up negative. Is there a better way to test for children? This kid HATES bloodwork (almost passes out) and I can't see putting him through an endoscopy.

Any thoughts?


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



Celiac.com Sponsor (A8-M):



azmom3 Contributor
I'm in the process of a gluten-free trial myself for my own issues, but now I'm concerned about my son. He's had chronic diarrhea for more than a year, he went through a period of time where he was sick (throwing up) frequently (a couple of times a month without other obvious sickness) and he was tired a lot and his head hurt.

He went through a multitude of tests and through several channels we discovered that his ANAs came up high on his blood tests and he did get dx's of OCD and Tourette's from his developmental pediatrician.

Well, after what I went through/am going through, I decided to get him tested as well, but I wasn't sure how to go about it. For me, the blood tests and the biopsies came up negative. Is there a better way to test for children? This kid HATES bloodwork (almost passes out) and I can't see putting him through an endoscopy.

Any thoughts?

You might look into Enterolab. They use a stool sample and I believe you don't even have to be eating gluten at the time of the test as you do with both blood and biopsy, so you could get tested this way also. From what I understand they're tests are very sensitive and may pick up something that the other tests can't. The downside? Expensive and not covered by insurance all the time. Someone on this board can probably give you more information as I'm still new myself and haven't used Enterolab as of yet. good luck!

AndreaB Contributor

I recommend enterolab. They can't give an official dx but they can tell you whether you have an active gluten intolerance. I had my family done and aside from my husband we are gluten intolerant. I didn't even try to run it through insurance. Enterolab gives you the code break down so you can submit it for reimbursement if they'll cover any of it. Open Original Shared Link

mythreesuns Contributor

Thanks, I did look into Enterolab for myself and it's just too costly for us at this time. I know that sounds trite, but here it is August 16th and I haven't paid this month's mortgage yet, so I really do mean it when I say we don't have the money. :D

Nic Collaborator

Plenty of us can understand the not being able to afford it, don't feel bad :) . If you are really avoiding the blood work for your son you can just try a gluten free challenge with him. If you take it away you should start to see improvement within the next few weeks if he has Celiac. At least that is what I have understood from parents of kids who have D as their symptom as well as my father who is a Celiac. My son on the other hand had constipation and therefore took about 3 months to see improvement.

Nicole

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,763
    • Most Online (within 30 mins)
      7,748

    Donna Williamson
    Newest Member
    Donna Williamson
    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
      I cannot tolerate it at all - triggers burning and nausea, ditto aspirin.  Here in the UK I take Paracetamol.
    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
×
×
  • 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.