Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Children With Negative Iga, Have 2 Genes, No Specific Symptoms. Go gluten-free?
0

10 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

 

 

 

 

http://www.cureceliacdisease.org/archives/faq/what-percentage-of-those-with-the-genes-will-develop-celiac-disease

 

 

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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.

 


 

 

0

Share this post


Link to post
Share on other sites




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

 

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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???

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,872
    • Total Posts
      919,408
  • Topics

  • Posts

    • Help
      Ok so I had my colonoscopy & endoscopy last Thursday. Don't get results until July 13th as GI is on vacation. I've had bad pain in my lower left abdomen that wraps around to my lower back as well for the past 4 days..even hurts to touch lightly. Went back to the ER & they did an ultrasound & CT scan. The Doctor said that I have "prominent" lymph nodes in the area that is painful as well as thickening & inflammation of my Sigmond colon? Um ok what is that all about? Kind of freaking out over the whole swollen lymph nodes thing. Has anyone ever dealt with this before? 😒
    • Enormous Stool
      My 2 year old daughter has sufferd with extremely large stools for over a year. She will have a bm once or twice a week there has been blood sometimes i took her to the docs and they gave her some stool softner which didnt help they tried uping the dose which still didnt help and they told me it would eventually work which didnt she was then put on movicol which she was only supposed to get half a sachet still no diffrence i uped it to the the full sachet which helps a little she doesnt always have large stools but most of the time she does. She has got to a stage where she clenches and wont let it out because of how sore it is i try to put her on the toilet for it to come a little easier for her but she screams and will try hide herself in a corner and wont let you anywere near her it is heart breaking to watch her. If anyone has any in advice i would really like to hear.   Thanks.
    • Starting Over with GI Dr.
      Everything I have learned I have learned through this forum or simply from my last EGD results and labs and then looking them up on the internet.  The drs have given no information except for do a gluten free diet.  My understanding is that a repeat EGD is needed to confirm healing.  When I was tested about this time last year I was a Marsh3b.  Which in my research is pretty serious.  I am still having ill effects from god only knows what these days.  I went strictly gluten free June 2015.  I have had glutenings (not by choice) and the last one I had was because of an antibiotic that I took that has sent me through the roof with anxiety issues.  I try to be as careful as possible but it is like it doesn't seem to matter how careful I am I am either aching and hurting in my joints, tired all the time or OK one minute and the next feel like crap and that my world is about to end.  It is very frustrating to say the least when you go to the dr and you are expecting support or some sort of answer and don't get one.  I have eliminated milk from my diet as of about a month and a half ago.  That seemed to help, some.  But I still have days where I hurt and ache in my elbows and in my hands.  I have moments when I am about to freeze to death and sit with a heater and where I live the temps outside are 90+ degrees plus humidity and the AC is not even on.  Most of this has just started happening I would say in the past 4 months or so.  At night when I go to bed I wear sweat pants and a sweat shirt and sleep under 4 blankets and a sheet.  They say my thyroid is fine.  I feel like I have some issues with my nervous system but to be honest with you I haven't seen drs enough to mention this to them because all they are worried about is if I have diarrhea.  Cycling Lady I will be keeping any all records that I have and continue to gather the ones for anything I have done in the future.  .  I have been through health issues with my husband and would keep all of his records and labs so we would have proof.  Just seems like doctors don't care anymore.  The last GP I went to actually listened to me and I will see her again next month after the EGD.  I did give ALL of my records, EGD, labs, medical records, etc. to the new GI prior to our first visit back in January.  She said she reviewed them.  And told me we would re-draw the labs and schedule EGD to check healing when I went to her this month.  We have scheduled the EGD but no mention of labs.  JMG I am having the procedure re-done so that I can see if I am healing.  Mostly because of all the ailments I still have or seem to be developing every day.  I used to be a person who could remember things and get things accomplished but lately that has not been happening and scares me more and more every day. I understand that no procedure is risk free.  I have had 2 C-sections, wisdom teeth removed and tubal ligation.  Each one had its own issues after they were done.  I am a person who has to see it to believe it I guess.  If I don't see it, it is hard for me to understand it.  It is hard to figure this out when I am the one who usually takes care of everyone else but then when I need to be taken care of, nobody knows what to do.  I think that is it in a nut shell.  All that ya'll have told me is a big help.  Around here I have no support groups or even a good friend I can talk to about stuff that would even come close to understanding.  My husband will listen, but he doesn't understand.   
    • Loved ones with Celiac in nursing home
      It will be in Gluten-Free Living later this year, October I think
    • Prague Looks for Consensus on Adolescent and Teen Celiac Disease Management
      The Prague consensus report looks to shine some light on the best options for providing optimal transition into teen and adult healthcare for patients with celiac disease. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,906
    • Most Online
      1,763

    Newest Member
    staceyO1
    Joined