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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    2. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    5. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,877
    • Most Online (within 30 mins)
      7,748

    Christian Konig
    Newest Member
    Christian Konig
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.