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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    2. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    3. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    4. - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

    5. - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748

    Taraceliacmama
    Newest Member
    Taraceliacmama
    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

    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.