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

Mom Of 15 Month Old With Celiac Disease

SDevanney

Recommended Posts

SDevanney Newbie
SDevanney
Posted

On Thursday, July 19th we were told our 15 month old son suffers from celiac disease. (blood test came back poitive) Can not get an appointment with GI Specialist until 9/27/07. What do I do in the mean time?

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

Celiac.com Sponsor (A8-M):


Nic Collaborator
Nic
Posted

Hi, this is a tough one because the GI will probably want to do a biopsy which means you would have to keep him on gluten until then. The biopsy will only come up positive if he is eating gluten. Unless you are not willing to do the biopsy and are going to rely on the blood work for your dianosis which a lot of people do. Maybe you could call the GI office and explain that your son tested positive through blood and since your appointment isn't for another 2 months, what do they want you to do. Sorry I can't offer more.

Nicole

SDevanney Newbie
SDevanney
Posted
  • Author
Hi, this is a tough one because the GI will probably want to do a biopsy which means you would have to keep him on gluten until then. The biopsy will only come up positive if he is eating gluten. Unless you are not willing to do the biopsy and are going to rely on the blood work for your dianosis which a lot of people do. Maybe you could call the GI office and explain that your son tested positive through blood and since your appointment isn't for another 2 months, what do they want you to do. Sorry I can't offer more.

Nicole

Thanks for the advise.

kbtoyssni Contributor
kbtoyssni
Posted

If the blood test is positive, then he has celiac. There is no reason to do a biopsy unless there's something in addition to celiac that the doctor wants to look for. Many in the medical community consider a biopsy the "gold standard" of diagnosis, but you really don't need one if you have positive bloodwork. And a biopsy can often come back negative, too, especially in young children who haven't had enough time eating gluten to develop lots of intestinal damage (which is a good thing!). At this point you have a choice to make: keep him on gluten and wait for the biopsy or go gluten free now and start the healing process. Some people need the biopsy and its additional proof that he/she has celiac in order to 100% commit to a gluten free diet. If you're someone who is satisfied with the proof you already have, then I see no reason for a biopsy.

shayesmom Rookie
shayesmom
Posted
On Thursday, July 19th we were told our 15 month old son suffers from celiac disease. (blood test came back poitive) Can not get an appointment with GI Specialist until 9/27/07. What do I do in the mean time?

In a 15 month old, I would think that positive bloodwork would suffice. The GI will most certainly want to biopsy to verify the bloodwork (though I don't really see the sense as the bloodwork is highly specific to this disease).

Considering your son's age....you have to look at the symptoms he's having and make your determination from there. How sick is he? What has led you down this road of testing? And how quickly do you want this resolved? Can your son (and you) wait another few months in order to have two doctors concur that celiac disease is the problem?

I was once in shoes similar to yours with my dd. But my dd's bloodwork came back negative and we declined the biopsy. We opted to give the diet a try as it was the safest and least invasive way to go. The results were amazing. And I can honestly say that I wanted to kick myself in the rear for not finding out about this sooner. Up until then, I never knew what Celiac was...much less suspected it was a problem! When I think of all the pain my dd must have been in....and then all of the hedging the doctors were doing and how they discouraged me from even trying the diet. It's infuriating.

In any case, this decision is a very personal one to make. Don't let anyone pressure you into anything (be they doctor, friend or relative). Follow your own heart and mind. You know what is best for your son and I'm sure that you'll uphold what is in his best interest.

amberleigh Contributor
amberleigh
Posted

I'm sorry to hear that (((HUGS))). I know most of their diet at that age is GLUTEN as I have 2 daughters around that age.

I found out I have celiac disease a bit over a week ago and we decided to have the kids tested even though they don't really show symptoms for it. Our Ped GI does the bloodwork and then if that is positive, they do the scope as well. My husband doesn't really want to put them under anesthesia, but the nurse I talked to said that since it's such a restrictive diet, they like to be 100% sure with the scope. It makes sense to me and I agree with it but we'll see what we do when we actually get to that point (our appt isn't until 8/15).

When my blood test results came back positive, my GI told me to continue eating "normally" until the scope, which I did. Then when the scope confirmed it, I went gluten-free. However, I wasn't all *that* sick...so I guess it depends on how sick your kiddo is.

Hope that helps a little and prayers to you and your son!

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.