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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop...
    2. tiffanygosci
      - tiffanygosci posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Aldi Pueblo Lindo Yellow Corn Tortillas

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products...
    3. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache...
    4. trents
      - trents replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women...
    5. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      New Celiac Mama in My 30s

      By trents · Posted

      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • 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.