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

My Son Saw Gi Doctor Yesterday


parkerrmmc

Recommended Posts

parkerrmmc Apprentice

Hello! I joined this message board a few weeks ago and I first want to start by saying THANKS to all of you. Everyone has been so helpful therefore reducing my stress greatly. Now to my son, his pediatrician sent us to a Pediatric GI doctor to check for Celiac, due to an increased AGA IgG level. When we went yesterday, she immediately put him back on a regular diet (he's been gluten-free for over two months) for 2-3 months. She did order all 5 blood tests yesterday even though he's been gluten-free for awhile. She is also having us collect stool so that she can check the fat content. At the end of the 2-3 months, she wants to repeat the 5 blood tests and if they show positive for Celiac, she wants to order DNA testing. I was shocked when she said this beacuse in all the posts I've read, most doctors won't order this. Am I correct? She never mentioned anything about scope or biopsy, just the blood tests and the DNA testing. What are your thoughts on all of this? Any information will be greatly appreciated.


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



Celiac.com Sponsor (A8-M):



plantime Contributor

It sounds like she is starting with the least invasive tests first. If she comes up with positive results from the bloodwork and stool sample, she might not order an endoscopy. Although she might order it later to determine the extent of damage, but that will depend on what she finds in the other tests. It is my ~humble~ :D *opinion* that she is starting off very well! Perhaps you have found a good GI doc for your son!

KaitiUSA Enthusiast

I am not sure if some doctors opt not to do that for celiac but it sounds like you found a good doctor who is being very thorough. My GI doctor ordered the 5 tests plus the gene test and at that point I had no clue what I needed to be tested for. Keep us posted :D

trying4faith Apprentice

Hi - I have a post out there, I'm new. I just read yours and wondered what are the 5 tests, and what gene test is being discussed?

My son, now 2 1/2, has not gained weight in over a year. The doctors don't seem to know what to do other than suggest a feeding tube but that terrifies me.

He was fine on baby food and Alimentum. The trouble all began with table food. He has foul-smelling stool, often has gas, and burps all the time.

My post has information about me (still up in the air) and since you mentioned a gene test, at this point, I'd do just about anything to find out what's ailing us both.

Guest ajlauer

trying4faith:

The thought of a feeding tube makes me want to vomit! FIND A NEW DOCTOR!! BLECH!!!!!!!!!!! My daughter, almost 4, just finally hit the 29-pound marker! I was thrilled, needless to say. She has been at 28 pounds for at least the last 6 months. In fact, she can now share some shirts with her 1-yr old sister! I suspected food allergies earlier this year. They tested her - and she's allergic to 7 different things. I brought her in for a follow up the other day, and they drew more blood. They are checking for celiac disease, cystic fibrosis, and "some other things" that can cause failure to thrive in a young child. What I *totally* appreciated - is that they're doing all these tests at once. So she only needs to be poked one time. They're also doing the stool test for fat that was mentioned in the original poster's message.

To answer your question on the 5 tests: I don't know them offhand. In the topic about testing and diagnosis.... I recently asked the question "Exactly what tests do I need". There is a terrific answer there - shows the long name (and abbreviated name) of all the 5 tests. You know... when it comes to our children, they should always start with the least-traumatic tests first. Drawing blood is harsh on them for a few minutes - but the terror goes away quickly. I can't imagine having to put a feeding tube in my daughter!!!! That would be just plain awful!!

If my daughter's test come back negative or inconclusive, we will probably just try the gluten-free diet and see what happens. I would certainly try the diet before putting her thru any invasive procedures (biopsy, etc...).

*hugs*

KaitiUSA Enthusiast

These are the 5 tests I was talking about:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

These are the most common tests for celiac.

trying4faith Apprentice

Thank you for the replies. I believe I was tested for three of the 5, plus wheat. Aidan, my son, has had blood drawn many times, unfortunately.

I do not know what exact tests were conducted for celiac disease for him, but will follow up with his GI and ask. I was told she is very familiar with celiac disease in children, she's at UNC hospital.

The idea of a feeding tube chills me as well. I've been putting that off for some time now.

His food allergy panel is positive for dairy, egg (very high), moderate for soy, and mild for peanut. He won't eat chicken or fish no matter how much I try to disguise them. Does not eat red meat either, but will eat pork.

It's been very hard. If anyone knows of a good cookbook for gluten-free foods for children, I'll try it. The issue is, of course, he goes to daycare so it will be a real challenge to remove G altogether.


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



Celiac.com Sponsor (A8-M):



  • 5 months later...
hilaryw Newbie
Thank you for the replies.  I believe I was tested for three of the 5, plus wheat.  Aidan, my son, has had blood drawn many times, unfortunately.

I do not know what exact tests were conducted for celiac disease for him, but will follow up with his GI and ask.  I was told she is very familiar with celiac disease in children, she's at UNC hospital.

The idea of a feeding tube chills me as well.  I've been putting that off for some time now.

His food allergy panel is positive for dairy, egg (very high), moderate for soy, and mild for peanut.  He won't eat chicken or fish no matter how much I try to disguise them.  Does not eat red meat either, but will eat pork.

It's been very hard.  If anyone knows of a good cookbook for gluten-free foods for children, I'll try it.  The issue is, of course, he goes to daycare so it will be a real challenge to remove G altogether.

<{POST_SNAPBACK}>

hilaryw Newbie

To whoever asked about good gluten-free cookbook for kids: Incredible Edible Gluten Free foods.

Re; those who think you should not do biopsy b/c it is so invasive, I respectfully disagree. We just had one for our 4yo who had positive blood work. It was not that big a deal, and the dr. got to see the extent of the damage, and got to look at her body on the way down. She diagnosed an ulcer which could be the cause of our daughter's anemia, and gave us ways to treat it. In short, going in for a look seems to me to be the wisest way to go, especially since it is the "gold std." What if you just go gluten-free and don't know about some other problem that could be caught via endoscopy? Also, I know celiac disease mimics some other diseases (such as cystic fibrosis, Crohns) and the biopsy was not consistent w/ these, thankfully (although I'm still doing the sweat test next week for my own well-being). We bought the book "Eating Gluten Free With Emily" for kids, which my daughter loves, tells all about the diagnosis, etc.

Archived

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

  • 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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748

    MollyK
    Newest Member
    MollyK
    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

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.