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

Wow, I Am So Glad That I Found This Site


Carl's mom

Recommended Posts

Carl's mom Newbie

Although my son (age 9) has not formally been diagnosed as a Celiac, we strongly suspect that this is the case. For most of his life, he's had daily D. We didn't think much of it because as an infant he had a bowel intussesception (where the small intestine gets stuck in the large intestine), which required emergency surgery. Because of where the incision was located, they also took out his appendix. When we asked about the D, the doctors always told us it was likely related to the lack of appendix.

Fast forward a few years, he had chronic sinus infections (6 in four years), constant coughing, fatigue, bloated stomach, and still the D. Allergy testing revealed nothing notable. So rather than continue to give him antibiotic after antibiotic and steriod inhalers, I finally took him to a Nutritionist/Naturopath about a year ago. In addition to some probiotics and other suppliments, she put him on a wheat free and dairy free diet. Things got better, but not much until we took him off all gluten. (he also seem sensitive to all corn products, in addition to gluten and dairy).

He's gotten much better, but still suffers from some congestion and D, particularly when he cheats. He struggles ALOT with having to eat differently from the other kids, particularly in school when they have parties. I will send in treats just for him, but he will on occasion "forget" that he has his own.

A year ago, I knew nothing about Celiacs. I found this site while searching for gluten free cookie recepies for Christmas (and thank you for the flour combination suggestions, the gluten-free cookies I made were yummy!!!).

Now I think we should have Carl tested, but I don't think we can since he has been gluten-free (well, almost gluten-free) for over a year. What to do?


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



Celiac.com Sponsor (A8-M):



blueeyedmanda Community Regular

Welcome to the site.

I know a lot of members on here have used dietary response as their "test" Some people test negative and feel better avoiding gluten.

I hope this helps.

Feel free to ask any questions you might have.

loraleena Contributor

You could get a stool test through Enterolabs. Accurate even if off gluten for a year. Just the fact that he is doing so much better though is all you need to know.

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 MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

    2. - Scott Adams replied to chrish42's topic in Doctors
      5

      Doctors and Celiac.com

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    4. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,261
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
×
×
  • 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.