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

Questioning Gluten Intolerance


Echo

Recommended Posts

Echo Newbie

I joined this forum out of pure desperation and hope to benefit from all of your collective experience. My daughter was tested by Entero Lab and her results came back indicating gluten intolerance. The scores were very slight, though. We have had her on a gluten free diet for three weeks and not seen any big change other than a huge grocery bill. She had occasional stomach aches (never severe or any loose stools) and those at least have seemed to have disappeared. My question is whether or not she is truly gluten intolerant. If so, I'll do anything in the world to keep her gluten free but if not it seems like a huge burden for a seven year old with three younger sisters. Here are her test results:

Fecal Antiglidian IgA 10

Fecal Antitissue Transglutaminease IgA 6

Quantitative Microscopic Fecal Fat Score 385

She also had one of he main genes that predisposes to gluten sensitivity and celiac sprue and also a non celiac gene predisposing to gluten sensitivity.

I've heard that everyone is a little sensitive to gluten and wondering if this is the case here.

Thank you all so much for any guidance you can provide.


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



Celiac.com Sponsor (A8-M):



confused Community Regular

Have u taken her off dairy to see if she feels better off of that. I see you didnt test for casein. She might not be full celiac yet, but some time down the road she could be celiac and have to go off gluten.

You could put her back on gluten and see how she feels, if the symptoms come back then u know gluten is a problem and she needs to go off of it, and if she has one of the genes then it is likely the rest of the kids will have the celiac gene, it might be a good idea to take them all off of gluten and see what happens.

paula

Echo Newbie

Thank you. I did test her for egg, yeast, soy and cow's milk...all normal. Do you think her gluten levels are high enough to be a current problem? Again, I appreciate the help.

kbtoyssni Contributor

Just curious why you had her tested if she doesn't have any symptoms? She may be just barely gluten intolerant. I feel that most people start out just a little intolerant and get worse until they finally have so much damage they have celiac. Maybe that's the case here?

loraleena Contributor

I had heard that abnormal is abnormal. That someone with a low above normal reading could be very sick and someone with a high reading might not have symptoms. My entero was 18 and I was very sick. Not that high compared to a lot of others on here.

hathor Contributor

You can't tell by the number. Apparently, positive is positive. Someone with a higher score doesn't have a bigger problem. (I think you can compare your own results over time, though, to see if they are improving.)

I do wonder if they have a margin of error on the tests, though. I asked this once and never got a response. I have one 11 result and I don't see a reaction at all. But the food with my other 11 score is the thing I react to the most ...

I would tend to the view that your daughter does have a problem. She had stomach aches which went away when you eliminated the gluten. Plus she has malabsorption, which indicates that something was wrong.

Not all people with gluten intolerance get diarrhea. There are a large number of possible symptoms. If your daughter has improved in any way, physically, emotionally, or behaviorally, that would be confirmation of the test result.

You could also challenge her with gluten if you are really unsure. But I'm hesitant to suggest that with the stomach aches and the malabsorption score.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.