Jump to content

  • 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):

Positive Gene,negative Tests, Symptoms Help

ADevoto

Recommended Posts

ADevoto Explorer
ADevoto
Posted

I need a reality check from all of you. I have been going round and round with this issue for years. Here is the bottom line:

Three children and husband - one child is short for age but no digestive issues. Nothing with husband either.

Other 2 children (twins) test results:

BOth have DQ2 (one has an additional HLA-DQB1 *0201, 0602)

One tested through Promethius Lab - all negative blood work

One tested through Enterolab - positive on Gluten sensitivity Stool test (13 units)

One is labeled as Autistic, mood disorder, learning disability, severely constipated, underweight and skin ecemia (sp)

The other is dsylexic and has always had digestive issues (gas).

When they were little both had big tummies and very brightly colored poop

My tests (Promethius Labs)

- Positive for DQ2 but negative for all other blood work

- Been dx with IBS since I was 12 and for the last month and 1/2 - severe morning diaherra

I have my doctor's appt tomorrow and I have this feeling he is going to say the same thing every other doctor has said - no problem.

Do you think that I should just ignore them all and go on a gluten free diet or are they right? It will be extremely difficult with my autistic child to go on diet - all he eats is pasta and bread. Maybe I am just looking for something to correct problems that aren't related. HELP

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

Celiac.com Sponsor (A8-M):


ADevoto Explorer
ADevoto
Posted
  • Author
I need a reality check from all of you. I have been going round and round with this issue for years. Here is the bottom line:

Three children and husband - one child is short for age but no digestive issues. Nothing with husband either.

Other 2 children (twins) test results:

BOth have DQ2 (one has an additional HLA-DQB1 *0201, 0602)

One tested through Promethius Lab - all negative blood work

One tested through Enterolab - positive on Gluten sensitivity Stool test (13 units)

One is labeled as Autistic, mood disorder, learning disability, severely constipated, underweight and skin ecemia (sp)

The other is dsylexic and has always had digestive issues (gas).

When they were little both had big tummies and very brightly colored poop

My tests (Promethius Labs)

- Positive for DQ2 but negative for all other blood work

- Been dx with IBS since I was 12 and for the last month and 1/2 - severe morning diaherra

I have my doctor's appt tomorrow and I have this feeling he is going to say the same thing every other doctor has said - no problem.

Do you think that I should just ignore them all and go on a gluten free diet or are they right? It will be extremely difficult with my autistic child to go on diet - all he eats is pasta and bread. Maybe I am just looking for something to correct problems that aren't related. HELP

I forgot to add that I have multiple white matter brain lesions that no one can explain. I have been reading that may also be correlated with celiac.

nora-n Rookie
nora-n
Posted

About the white matter things and gluten, there are several entries about that in www.pubmed.com

YOu probably have read on all the autistic webpages where they report gluten and casein sensitivity, haven't you? And Dr. Karl Ludwig Reichelt's work?

The urine test is now done at neurozym. (peptide test for casein and gliadin)

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,036
    • Most Online (within 30 mins)
      10,442
    NCGS Celia
    Newest Member
    NCGS Celia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Worsening vision 🕵🏽‍♀️

      By trents · Posted

      Vitamin A is important for vision health. But be careful in supplementing it as it can lead to toxicity. Research it and consult with your medical professional. I do not have a definite answer to your original question but I was pursuing the possible cause of nutritional deficiency. But your visual deterioration could be unrelated to your celiac disease so don't rule that out.
    • Name
      Worsening vision 🕵🏽‍♀️

      By Name · Posted

      Currently 19. Doctors think I was 1 year old when celiac started, but I wasn't diagnosed until 18, because they didn't do lab work on minors. I've been on a strict gluten-free diet for 14 months now. For example only certified gluten-free nuts and I've researched best brands a lot. I take B vitamins, vitamin D, vitamin C, Curcumin with black pepper, black sesame and green tea extract, magnesium, iron, and a little selenium and zinc, beef liver capsules. I recently had my vitamin and mineral levels retested and D is the only one I don't have enough of now. I had my eyes tested at 17 and they were good back then.
    • Scott Adams
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By Scott Adams · Posted

      Not everyone with dermatitis herpetiformis needs to avoid iodine. DH is caused by gluten exposure, but iodine can worsen or trigger flares in a subset of people, especially when the rash is active or not yet controlled by a strict gluten-free diet. Some people react to iodized salt, seaweed, shellfish, or iodine supplements, while others tolerate normal dietary iodine without problems. In most cases, iodine restriction is individualized and often temporary, not a lifelong rule for everyone.
    • trents
      Worsening vision 🕵🏽‍♀️

      By trents · Posted

      Questions: How old are you now? How long ago were you diagnosed as having celiac disease? Do you practice a strict gluten-free diet? Are you taking vitamin and mineral supplements to offset the nutrient malabsorption issues typical of celiac disease and if so, can you elaborate on what you are taking?
    • Name
      Worsening vision 🕵🏽‍♀️

      By Name · Posted

      My vision was good as a teen and now has gotten worse in the last year. Could that be caused by my celiac disease?🤓😎🥸👓🕶️
×
×
  • Create New...