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

Super Sensitive Infant


MommaBecker

Recommended Posts

MommaBecker Newbie

My son is 11 months old and is super sensitive  His celiac was noticed before he even tried gluten in person. He can detect miniscule amounts in my breast milk which has been a struggle. He also has DH which is a great indicator when he has had a bad food reaction. My question to the super sensitive people is do you have any problems with other grains? My son can't do any corn or soy derivatives without having DH flare ups. He also can't have millet, sorghum, rice, amaranth, coffee or legumes.

 

Any suggestions? Is this something he will get better about? I know that we can clear his skin totally when he is gluten, corn, soy, and grain free completely. He has no allergies and has been tested for every kind.    


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

As a super sensitive, I am sure to buy grains in the whole form so that I can sort through them and remove gluten grains.  After sorting, I wash with soap.  I am sure to rinse very well.  Even at that I tend to react, so right now I am eating rice from Thailand where they don't have much in the way of gluten grains.  I still react to that unwashed, but washed I can handle it.  

 

 

Gluten free grains can be contaminated.   Open Original Shared Link

 

I do the same thing with coffee.  Coffee can be adulterated with barley. Open Original Shared Link

 

Do you have a gluten free household?  Have you checked toiletries for gluten?

Gemini Experienced

My son is 11 months old and is super sensitive  His celiac was noticed before he even tried gluten in person. He can detect miniscule amounts in my breast milk which has been a struggle. He also has DH which is a great indicator when he has had a bad food reaction. My question to the super sensitive people is do you have any problems with other grains? My son can't do any corn or soy derivatives without having DH flare ups. He also can't have millet, sorghum, rice, amaranth, coffee or legumes.

 

Any suggestions? Is this something he will get better about? I know that we can clear his skin totally when he is gluten, corn, soy, and grain free completely. He has no allergies and has been tested for every kind.    

From what I have extensively read about Celiac Disease, you cannot trigger for it unless gluten has been introduced into your diet and you are eating it. Has your son been tested for Celiac?  11 months old is young to render a positive diagnosis.  Most doctors won't even test for it at that age.  How do you know he can't have all the other grains mentioned?  

 

Allergy testing is notoriously unreliable in a child so young.  He may be allergic and not Celiac yet still test negative on allergy testing.  Was he officially diagnosed with DH?

kareng Grand Master

I'm just re- reading this and this struck me - corn and soy do not cause DH. DH is a manifestation of Celiac Disease. I'm guessing you haven't had this " DH" biopsied to see if it is DH?

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. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,801
    • Most Online (within 30 mins)
      7,748

    b r i t t a n y. g r i f f
    Newest Member
    b r i t t a n y. g r i f f
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.