Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

At The Brink Of An Autoimmune Cliff?


linda-r

Recommended Posts

linda-r Rookie

My 14 yr. old daughter complained of "tummy hurt" from age 4. She was diagnosed with GERD at age 8. She had an endoscopy 2 years ago that showed normal villi but demonstrated "mild reactive gastropathy". A diagnosis of irritable bowel was proposed. She started having episodes of Raynaud's at age 12. Six months ago she developed scalp psoriasis. She has some issues with brain fogginess, occasional tingling in extremities, and a few more aches and pains than a normal teenager. To confuse the issue, she is well muscled despite a very lean build and appears the picture of vibrant health. She was tested for celiac by Prometheus a couple months ago and here are the results:

Anti-Gliadin IgG = 3.9; normal = <10

Anti-Gliadin IgA = <1.2; normal = <5

Anti TTG IgA = <1.2; normal = <4

Anti EMA IgA = Negative; normal = Negative

Total Serum IgA = 42; normal = 44-144

HLA allelic variant associated with celiac disease detected: DQ8 heterozygous; 2X risk: risk moderate

Although she was eating gluten at the time of this test, her intake had already been somewhat reduced on her own to avoid foods that upset her stomach. Her pediatrician approved going gluten free. GI docs were unhelpful. She is having a hard time staying consistently gluten free and cheats with pizza & hamburgers a couple times a week. She admits to feeling better without gluten. How hard should I press her to be strict about the diet without an official diagnosis? I feel she is at the brink of an autoimmune cliff.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Press her hard. The IGA deficincy could be impacting the tests for celiac and false negatives are all too common even with a normal IGA level.

She can still have burgers and pizza, there are gluten free versions of both that are not bad. It might help her also to have her visit here and perhaps even 'talk' to some of the teens in the teen section.

GottaSki Mentor

This one is tough. I've got two teen boys - both tested negative, but both have different celiac symptoms.

When I was diagnosed this past spring we talked about the likelihood that they have celiac.

My 16 year old (15 when he went gluten-free) decided to go gluten-free to see if it improved his gerd and fatigue symptoms. He has had major improvement with fatigue and some improvement with gerd. Additionally his accidental or intentional glutenings leave him slightly bloated and exhausted. He was sold within a month and is gluten-free. BUT he is still a teen - he has minor slips (about three in 5 months) like eating just a small piece of someone's food. Each time he has had a reaction. On whole I think he is doing very well for such a drastic diet change for a teen.

My 14 year old has not gone gluten free -- although his symptoms have improved since there is far less gluten in his diet - all breakfast and dinners are gluten-free. Still discussing his need to go gluten-free for his health.

It is tough for many to accept gluten-free when the blood work is negative.

linda-r Rookie

I think I do need to push her harder because I feel her health is at the tipping point. Even if she is not celiac she may be gluten intolerant which may cause continuing autoimmune issues. I may try for strict adherence for 6 or 8 weeks to see if the abdominal pain clears and the psoriasis improves. She can tolerate the pain, but the rash on her scalp is bugging her.

She also may need the support of the teen group. She has made a new friend at high school that has RA. She is trying gluten free after my daughter suggested it because she also has GI symptoms. I am sure her parents also did some research. Teen networking can be useful.

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. - thejayland10 replied to thejayland10's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      TTG IgA and IGA elevated mildy

    2. - trents replied to brian weinstein's topic in Coping with Celiac Disease
      3

      Cigars

    3. - brian weinstein replied to brian weinstein's topic in Coping with Celiac Disease
      3

      Cigars

    4. - trents replied to brian weinstein's topic in Coping with Celiac Disease
      3

      Cigars

    5. - brian weinstein posted a topic in Coping with Celiac Disease
      3

      Cigars


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,207
    • Most Online (within 30 mins)
      7,748

    nealp
    Newest Member
    nealp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • thejayland10
      thank yo, i still eat a bit of dairy and a fair amount of processed foods. I wonder if I have sibo... I will look into that 
    • trents
      I think the best you will be able to do is to find out if gluten, or at least wheat, barley or rye is an intentional ingredient in a smoke product and only the manufacturer can answer that question. Since smokes are regulated by the AFT and not the FDA, allergens are not required to be declared in the labeling.
    • brian weinstein
      yes i understand that pectin is gluten free ty.  i want to know if any cigars are gluten free its a simple question
    • trents
      Welcome to the forum, @brian weinstein! Gluten is a protein found in wheat barley and rye kernels. Pectin is a polysaccharide (a very complex sugar) found in the cell walls of fruits and vegetables. It is most commonly used as a thickening agent in food products, particularly jellies. So, pectin is naturally gluten free. That is not to the same as saying the cigar is gluten free.  Personally, I am reluctant to text you. I think most of us would feel the same way. Too many people already have access to our cell phone numbers.
    • brian weinstein
      i have a question i called 3 cigar manufacturers alec bradley, olivia and camacho to ask if any of their cigars are gluten free?  camacho told me that their cigars are made with pectin does that mean they are gluten free?  does anyone know the correct answer please let me know text me at (347) 219-6325 ty 
×
×
  • Create New...