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

Children With Negative Iga, Have 2 Genes, No Specific Symptoms. Go gluten-free?

luluo

Recommended Posts

luluo Newbie
luluo
Posted

I am gluten free based on an elimination diet done back in 2004. I never had a blood test because I had been gluten free for a while but my symptoms disappeared when I went gluten free. I never had further testing because I didn't want to load on gluten to have them done since I am doing well. A few years back I did get a genetic test done through my doctor and I have the DQ2 gene.

 

I recently had my children tested. The genetic tests were done through Enterolab and the IGA tests were done through their doctor. They both have tested positive for two genes. Either DQ2/DQ2 or DQ2/DQ8 (not sure which my husband carries as he refuses to be tested). They do not have the HLA-DQB1. Their Transglutimate IGA tests were negative and were <1.2 (standard <4.0). Their Celiac Disease Antibodies were 110 and 46 (standard 29-256).

 

Based on this information would you go ahead and switch them to gluten-free? They have no bowel or digestive issues, they are not vitamin deficient, and do not have cognitive issues. 

 

Thanks for any insight you can provide.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Just if it makes it a bit easier at home.  My kids have some gluten and they are old enough to keep it on thier counter and be careful.  If I fix meals, its gluten free.  I used to try to fix gluten-free pasta for me and gluten for them and it got too confusing keeping spoons out of the wrong pot, Unless one person was responsible for one pot and one for the other.

 

 

 

 

Open Original Shared Link

 

 

What percentage of those with the genes will develop celiac disease?

Less than 5% of those with one or both genes will develop the disease

nvsmom Community Regular
nvsmom
Posted

My kids also tested negative on the tTG IgA. Two out of three of them had some mild symptoms though (frequent BMs, some stomach aches, headaches, some behavioral issues, short stature in one son) and going gluten-free has helped. It wan't a dramatic improvement because they did not have dramatic symptoms. One son appears to have no gluten issues but he still had a growth spurt like his brothers did after being gluten-free for a few months.

 

I mentioned this because I guess I'm one of those extremists who believes that our present day, heavily genetically modified wheat (it went form 6 chromosomes 150 years ago to 40 something today) really isn't good for anybody. I see it as fake food, albeit tasty fake food.  ;) LOL I think it's a good idea to drop wheat, and I don't think it needs to be substituted with gluten-free products (which aren't very healthy either). Ideally it should be replaced with whole foods...

 

I'm stepping off my soap box now. :)

 

I agree with Karen, it looks like there is no real need to make them eat gluten-free from a gluten intolerance stand point, but it would make it simpler in the kitchen for you if they are. If you want to remove gluten foods for nutritional reasons, I say go for it.  :)

 

Best wishes.

cyclinglady Grand Master
cyclinglady
Posted

Since both my husband and I have celiac disease,  I have made my house gluten-free with the exception of a few cereal bars, cereal and cookies I purchase for my daughter as a treat.   I even purchased PB & J frozen sandwiches so I don't have to buy bread and it's a fast lunch on those early mornings she needs to be at school early.   She likes all the gluten-free items that I bake and freeze.  While my husband was just gluten-free, I'd cook two different pots of pasta.  It was a hassle!  

 

I do all the cooking, but I have reserved some Tupperware, spoons, a pot and frying pan for my daughter to use.  We still have some mac and cheese and noodles that her friends devour when they are over (and it's cheaper!)  Her name is on those utensils and cookware.  She also has her own toaster, but lately she's just been eating gluten-free bread since being a newbie, I can't be tempted with glutened items yet.  I have managed over the years to let them eat ice cream and eggs in front of me, but I have substitutes that I like and I don’t’ feel deprived.. 

 

So, I'd go gluten free as much as possible with your kids and husband.  Less chance of cross contamination.  As long as you're eating healthy foods (fiber and whole grains), your kids should be fine.  I have read that in one study 50% of celiac disease patients tested and who have been gluten-free for 10 years (healed digestive system) were considered malnourished.  Eating refined gluten-free foods is not good!  We eat lots of veggies even for breakfast.   We reserve cereal like Chex just for camping/emergency foods.  I cook whole grains like brown rice porridge, quinoa and buckwheat (yum, quinoa with cocoa and banana!) and my daughter and husband love it.   I've always cooked popcorn on the stove because we don't have allergies and it's yummy and visiting kids love it. 

luluo Newbie
luluo
Posted
  • Author

Thank you all. I was planning to make the house almost 100% gluten free. I guess I just needed some extra support in that area. My husband kind of scoffs at the idea. He is supportive but change is hard for him. It is a pain to fix everything separate and have separate toasters, etc. Over the summer I will slowly switch the house to be mostly gluten free. He probably won't even realize. lol. 

 

Thank you again.

 


 

 

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Before you make your kids gluten free get them tested for DGP-IgG.

 

DGP-IgG is the most sensitive Celiac blood test for children.

nora-n Rookie
nora-n
Posted

The gene tests are only about the risk for celiac.

You do not really need to switch the kids to gluten-free since they have no symptoms or problems.

 

But do keep testing them for celiac every three years if they continue eating gluten.

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

I am gluten free based on an elimination diet done back in 2004. I never had a blood test because I had been gluten free for a while but my symptoms disappeared when I went gluten free. I never had further testing because I didn't want to load on gluten to have them done since I am doing well. A few years back I did get a genetic test done through my doctor and I have the DQ2 gene.

 

I recently had my children tested. The genetic tests were done through Enterolab and the IGA tests were done through their doctor. They both have tested positive for two genes. Either DQ2/DQ2 or DQ2/DQ8 (not sure which my husband carries as he refuses to be tested). They do not have the HLA-DQB1. Their Transglutimate IGA tests were negative and were <1.2 (standard <4.0). Their Celiac Disease Antibodies were 110 and 46 (standard 29-256).

 

Based on this information would you go ahead and switch them to gluten-free? They have no bowel or digestive issues, they are not vitamin deficient, and do not have cognitive issues. 

 

Thanks for any insight you can provide.

Maybe one of the genetic wizards here could comment.. If one of your kids is DQ2DQ2, and the other is DQ2/DQ8,  it would seem that your husband would be DQ2/DQ8???

nora-n Rookie
nora-n
Posted

Since the test back then only showed DQ2, then it means the other parent has DQ8.

It looks like mother has DQ2&DQ2 (but not sure two are present) and father must have DQ8 AND DQ2

 

There is a very very slight chance the test back then missed DQ8 in the mother since that test for DQ8 is not so sensitive, at least back then.

frieze Community Regular
frieze
Posted

Since the test back then only showed DQ2, then it means the other parent has DQ8.

It looks like mother has DQ2&DQ2 (but not sure two are present) and father must have DQ8 AND DQ2

 

There is a very very slight chance the test back then missed DQ8 in the mother since that test for DQ8 is not so sensitive, at least back then.

thanks!

Archived

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

Go to topic listing

  • 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
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,436
    • Most Online (within 30 mins)
      7,748
    Vivien Armstrong
    Newest Member
    Vivien Armstrong
    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
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.