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 11 year old's test results - advice

lily414

Recommended Posts

lily414 Newbie
lily414
Posted

So my 11 year old has been having stomach troubles for a while. His doctor diagnosed him with gastritis and put him on nexium for a couple of months. It did help a little.  We finally got into see a pediatric GI and she tested him for celiac's disease. Here are his test results. I know they are positive but now they have scheduled him for an endoscopy with biopsies. Is there any chance he does not have celiac's disease or is it a forgone conclusion based on his lab results? Just trying to prepare myself. He still feels so sick and he has to wait 1 month to get the endoscopy (2 weeks in now). Thanks!

 

  • Open Original Shared Link
    294 Milligrams/deciliter
    Reference Range:
    59 Milligrams/deciliter - 301 Milligrams/deciliter
     
  •  
    Open Original Shared Link
    108 Unit(s) (High)
    Reference Range:
    < 20 Unit(s)
     
 
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I am sorry that to your son is sick!  He has a high chance of having celiac disease.  The GI may want to runs the entire celiac blood panel in addition to the endoscopy.  PLEASE! KEEP FEEDING YOUR SON GLUTEN OR ALL THE TESTS COULD BE NEGATIVE!!!!!!!

Open Original Shared Link

In the meantime continue to research celiac disease.   The good news is that this can be managed by diet!  He will be fine!  (And so will you!) 

Oh, all first-degree relatives will need to be tested even if symptom free.  

 

SLLRunner Enthusiast
SLLRunner
Posted

Welcome, @lily414:)
 

I don't have an answer to your question, but I think it's important to go through with all the endoscope. I know your 11 year old doesn't feel well, but make sure he eats gluten until all testing is done. Please let us know how it goes.

Jays911 Contributor
Jays911
Posted

Echoing what the others have said.  Keep him on gluten until the testing is done.  And if he does have celiacs, that is not a big issue.  Once you make the dietary adjustments, life gets much better.  Blessings.

ChiaChick Newbie
ChiaChick
Posted

Same as above. Stay with the gluten. Bring on the two weeks and the biopsy. What an awful time for you all. Please keep us informed. Brighter days ahead. xoxo

lily414 Newbie
lily414
Posted
  • Author

Thanks for the responses. We are just waiting it out and keeping him on the gluten until his scope. I am just anxious to find out what is wrong and to help him to feel better. Are there different "degrees" of celiac disease? I've heard so many different opinions on to what extent he will have to avoid gluten (cross contamination, etc). Just wondering how you know the limits. The said we will meet with a dietitian if his biopsy is positive. 

Jays911 Contributor
Jays911
Posted

Not really. For gluten intolerance, maybe, but for true Celiacs, no. It has been about a year and a half for me. It is very manageable now, although maybe once every two or three months I get glutened. The last time was at a reputable restaurant where I ate spring pea soup, and asked three times about it. As I finished it, I found fragments of bread in the soup. 

On the other hand, we found a great local bakery that sells old style bread that is gluten free. Your hardest issues will be traveling. Try the gluten free around me app.

 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted
8 hours ago, lily414 said:

Thanks for the responses. We are just waiting it out and keeping him on the gluten until his scope. I am just anxious to find out what is wrong and to help him to feel better. Are there different "degrees" of celiac disease? I've heard so many different opinions on to what extent he will have to avoid gluten (cross contamination, etc). Just wondering how you know the limits. The said we will meet with a dietitian if his biopsy is positive. 

If he is celiac, & I'm sure he will be, he will have to avoid gluten at all costs!!!! There is no allowance for "a little bit" or any cross contamination. Anytime he gets gluten, even a small amount, it will damage his villi & kick off the immune response. I think the same holds true for NCGS as well. There is not a ton of research on that yet so it's better to be safe than sorry. NCGS does not damage the villi but they don't know yet if it doesn't damage something else in the body. It will likely be years before we can know the answer to that one.

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. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      1

      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 ...
    2. 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...
    3. 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...
    4. Scott Adams
      - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant

      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 p...
    5. klmgarland
      - klmgarland posted a topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis. I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t. Who knew tha...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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.