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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    2. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    5. - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

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

    • Total Members
      133,085
    • Most Online (within 30 mins)
      7,748

    kk007
    Newest Member
    kk007
    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

    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.