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

Should I Push?


sarahelizabeth

Recommended Posts

sarahelizabeth Contributor

I visited these boards this time last year when our GI dr was debating testing my youngest for celiac. He never did end up testing him but now I am wondering whether I should push for it?? He's 21 months old now. This time last year he wasn't gaining weight (at all) and was falling completely off the growth charts. He had chronic constipation issues that wouldn't resolve even with miralax. He had chornic ear infectiosn (11 in 18 months and has had 2 sets of tubes), and horrible eczema as well. The GI Dr wanted us to do allergy testing first before he started looking at celiac or even possible hirshprungs. We thought he had a dairy allergy. Ended up he didn't and we started him on whole milk which he did MUCH better on than formula... finally started gaining some weight.

We found out at 11 months he had a peanut allergy... then at 20 months we found out he was also allergic to most all tree nuts, as well as vanilla, and green peppers. We've finally removed all his allergens but aren't seeing much improvement (some but not what we were hoping for). He's still constantly got a pimply eczema rash (does flare something awful if he does get an accidently exposure to an allergen), now he goes back and forth between diarrhea and constipation... his stools are often a very light yellow color and smell something fierce. He's still small BUT he's actually gaining weight now... up to the 10-25th percentile for weight now finally (up from below the 3rd before a year). He NEVER eats... its not that he's picky... seems totally disinterested and acts like it makes him sick to eat. Lately (the reason I've become concerned again) he's been sleeping ALL the time... falling asleep less than 2 hours after he wakes up and sleeping 16-17 hours a day... 3-4 hours more than he used to. I thought maybe it was a growth spurt but its been going on WAY longer than that and he's not eating to support a growth spurt. I am not sure what to think???


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I'd have him tested.

If gluten is not the problem, keep looking for what is. Some of us feel better on a gluten-free diet but have other health problems causing some of the symptoms.

Many different diseases that have a systemic reaction all have very similar symptoms.

I'd still try the diet once the testing is completed just to see if he responds favorably to it. But don't do it before the testing or it can affect the results.

plantime Contributor

Insist his docs run the tests. They are not near as bad as docs claim they are, and the diet is not even close to as bad. If your docs absolutely refuse to do the tests, then go glutenfree for him, and see if he gets better.

Juliet Newbie

Yes - insist that he run the test. This is very similar to how my son started getting very noticeably sick. It was during the time that he started getting very lethargic that he began to lose weight and get the distended belly and grey skin tones. Up until that time, he was only having the constipation/diarrhea cycle; he was still gaining weight and height.

ryebaby0 Enthusiast

Why not just start him on a gluten-free diet? The doctor's opinion is interesting, but not actually necessary....

happygirl Collaborator

If your doctor is not interested in running the tests, I would find another doctor who is open to it. Make sure the run the FULL Celiac panel.

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 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,212
    • Most Online (within 30 mins)
      7,748

    Melissa McGowan
    Newest Member
    Melissa McGowan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.