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

Another Newbie Needing Advice


Lyndsie

Recommended Posts

Lyndsie Newbie

Hi--

My son is 17 months old and is being tested for gluten intolerance. I'll give you a quick background. He was a very "easy" and happy baby until we started solids around 5 months. At that point he developed eczema, excessive night waking, fussiness, and odd stooling patterns. Our doctor thought it might be a milk allergy so I took him off all dairy and myself off too since I was breastfeeding. He definately seemed better, but some of the symptoms continued and his growth started to taper off. He is now in the 3rd percentile and started out in the 95th at birth. He was sent to an allergist he tested negative for any allergies but thought he could have lactose intolerance. So, my doctor has now decided to test him for gluten intolerance. We are awaiting the results right now, but based on everything that I have read so far I have a strong feeling this may be the problem.

I am completely freaked out right now. Not so much because I am afraid that he might have celiac but because I was told to keep feeding him gluten so that the endoscopy would be positive if the screening comes back positive. I feel like I am poisoning him by doing this. So, basically I don't know what to feed him while I wait for the results to come back. He has never been a good eater anyway and is so underweight, so it is difficult on a good day! Also, should I continue breastfeeding? I feel like this has been a lifeline for him. Does that mean I need to go gluten free too?

Sorry for all the questions! Thank you!

Lyndsie

My Interests & Personality


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



Celiac.com Sponsor (A8-M):



shan Contributor

Why shouldn't you continue to breastfeed? If you are eating gluten, then it is going into him anyway, and if you give him the bare minimum of gluten - like just his breakfast cereal and everything else is gluten free, then his biopsy will still come out as though he is eating gluten. Yes, gluten might seem like it is a poison (some people might answer you and say it is :) ) but if you want to know the answers, then it is easier to keep him on gluten than doing a challenge later. If they go off gluten they get very sensitive to it. Good luck with it all - i was where you are this time last year, waiting for results and a biopsy and was going crazy... Now she put on so much weight i can hardly carry her :D

Ursa Major Collaborator

I just want you to be aware that the testing on children that age is not very reliable. If he tests positive, it is definitely valid. But if he tests negative on either of the tests (or both) that may not mean a thing.

Either way, I urge you to just put him on the gluten-free diet after testing is done, as that is the most valid test, especially for young children.

When is his biopsy? If you have to wait for months, you would do better to just try the diet after the blood test and cancel the biopsy. On the other hand, if it is very soon, I'd say, go for it.

But yes, once you want to feed him gluten-free and you are still breastfeeding, you need to go gluten-free yourself as well.

slee Apprentice

Good luck to you. I understand how hard this is, it is what we are doing right now!

dandelionmom Enthusiast

Continue breastfeeding! There's enough info out there that shows that breastfeeding is beneficial for kids who have Celiac or who are at risk for it. If your son's results are positive, you will most likely stop eating gluten anyway (it is so hard to keep a child gluten-free if the household is full of gluten).

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. - Scott Adams commented on Scott Adams's article in Product Labeling Regulations
      2

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

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

      nothing has changed

    3. - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is it gluten?

    4. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

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

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748

    Sarah S
    Newest Member
    Sarah S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
×
×
  • 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.