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. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

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

    • Total Members
      132,810
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • 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.