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

3Yr old recently diagnosed and still having problems


fishermom

Recommended Posts

fishermom Newbie

my 3 year old son was diagnosed at the end of January. He still occasional complains of stomach pain and of back pain. He has tells me he has no energy... he'll lay on the floor and say "mommy, I'm just out of gas". I'm concerned that either we've missed another medical issue or maybe we're not being careful enough about gluten or does the body take a long time to recover? He had 25 days of vomiting and diarrhea in January, ended up losing 10% of his body weight and was hospitalized for dehydration which resulted in his diagnosis of celiac disease. His pediatrician thinks that maybe he's constipated (he's having bowel movements once or twice a day but he's straining more with them) and has us trying musalax to see if that will fix the issue. Any thoughts?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am sorry that your little boy is doing so poorly!  My heart goes out to you.

Perhaps your doctor told you that by going gluten free your son would bounce right back.  Unfortunately, not all of us bounce back so quickly.  A lot depends on the severity of intestinal damage, other health issues and frankly, learning the gluten free diet.  It is a lot to take in at one time.  That's typically why it takes so long to heal as the learning curve for the diet is steep!  

The end of January....that is just about two months ago.  I know kids tend to heal faster, but two months is a short amount of time.  To speed healing, take some tips from our Newbie 101 thread under the "Coping" section of this forum.  Consider eating whole nourishing simple foods that you cook yourself.  Do not eat out for the next couple of months until you have seen improvement.  Avoid gluten-free processed junk food.  Avoid dairy products as many of us become temporarily lactose intolerant since the enzymes to digest lactose are released from the ends of intestinal villi.  If the villi are destroyed, there's no enzymes = tummy ache and/or constipation. 

Focus on eat-to-digest foods (stewed meats in a crockpot), well-cooked veggies, rice and even cooked fruit (baked apples, etc.) are easier to digest.  When he feels better, add in dairy, slowly and keep a food diary.  Chances are he has other intolerances to foods (or food additives)  other than gluten that might just be temporary.  I  myself was lactose intolerant, can not still eat garlic or xanthan gum (a binder used in gluten-free commercial breads), got nuts back, and the list goes on. 

Then in the future, learn to bake and freeze goodies for him to take to parties, etc.  

Finally, I do not know how many others are in your family, but I would try to make your house as gluten free as possible until you see healing and are confident your other family members can keep him safe.  Let them eat gluten outside the house.  My kid gets her gluten at school for the most part.  We always wash our hands when we return home.  

Hang in there, Mom!  

 

 

mommida Enthusiast

Go back to the doctor's, there is a chance you missed something else.

Don't make any diet changes, as diet may determine other food intolerances or immune reactions.

Sorry about the constipation.  We have dealt with that.  Or best advice~ figs.  A high dose of magnesium and high fiber with iron too.  (anemia can cause constipation) All those little seeds act as colon scrubber.

basmmm Newbie

I am so sorry to hear that your 3 year old little boy isn't doing much better. I definitely don't know the answer but can share that my 3 year old son was diagnosed in February of this year after repeating blood work from November and then having an endoscopy in February. Within just a few days on a strictly gluten free diet, my son was doing remarkably better. He's been gluten free for about 6 weeks now and is doing great. We do have to watch his lactose consumption and have him on lactaid milk. His physician said to give it about 4 more months and then try him on regular milk as his intestines should have healed enough by then. I say all of that to say that my 3 year old had great improvement in a short time and maybe there is still something out there for your son to feel much better, too. Best of luck to all of you. It is tough seeing your little one not thriving.

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 JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

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

      Blood Test for Celiac wheat type matters?

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

    • Total Members
      133,136
    • Most Online (within 30 mins)
      7,748

    GFTom
    Newest Member
    GFTom
    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

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.