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

Torn About How To Test My Son, Lots Of Questions

Sarah8793

Recommended Posts

Sarah8793 Enthusiast
Sarah8793
Posted

First a little history again. I have 2 celiac genes and an active immune response to gluten (EnteroLab diagnosed). I know I should have my kids screened but I am trying to decide the best method. There are pros and cons to each. Here are my questions, your thoughts are so appreciated right now.

1)Do I test them regardless of symptoms (I kind of think yes). My 7 year old has some behavioral symptoms but that is it. My 3 year old has no symptoms.

2) I can have my pediatrician test them based on my gene test results w/EnteroLab, but then does documenting that in my childs medical chart pose problems with insurance later?

If I go the above route, I will not have them biopsied, I will then go through EnteroLab. The reason I am considering having the Ped. test first (blood test) is to save money.

3)Can insurance companies get access to medical charts or do they simply read the procedures on claims sent in by doctors' offices? In other words, tests run do not indicate celiac. Only results posted in a medical chart can prove that.

I am confused and really don't know the best route, just that I want to do something.

Thanks for any input on this,

Sarah

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted
1)Do I test them regardless of symptoms (I kind of think yes).

2) I can have my pediatrician test them based on my gene test results w/EnteroLab, but then does documenting that in my childs medical chart pose problems with insurance later?

3)Can insurance companies get access to medical charts or do they simply read the procedures on claims sent in by doctors' offices? In other words, tests run do not indicate celiac. Only results posted in a medical chart can prove that.

1) I would test regardless. I did enterolab testing with the 4 of 5 of us (just not baby yet) based on my allergy tests stating I was allergic to gluten among other things. 3 out of 4 of us tested positive for active gluten intolerance and all have 2 genes that either predispose to celiac or gluten sensitivity.

2) It wouldn't hurt to get the blood panel done but if the children aren't showing symptoms it would more than likely come back negative (not always though). Some people has had problems with insurance but I don't know about that. I sent the enterolab results to my doctor but haven't heard anything from her.

3) I don't know the answer to this question...sorry. :(

Nic Collaborator
Nic
Posted

Hi, what kind of insurance problems are you worrying about? I had my sons tested through our pediatrician and the ped. gastro. The only things that were ever not covered were when we had to use a lab out of our network because they were specialty labs. In one of those cases, the ped. GI wrote a letter to the insurance company asking them to cover it because we needed a more definitive answer. They did cover it after that.

Nicole

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Hi, what kind of insurance problems are you worrying about? I had my sons tested through our pediatrician and the ped. gastro. The only things that were ever not covered were when we had to use a lab out of our network because they were specialty labs. In one of those cases, the ped. GI wrote a letter to the insurance company asking them to cover it because we needed a more definitive answer. They did cover it after that.

Nicole

Sorry, I should have explained that part. I'm not worried about insurance paying for any test the Ped. orders. I'm more worried about if I want to take out life insurance one day. I don't know how the label would affect my kids either. My husband is wondering about this aloud with me. Just trying to make sure I do this the best way.

Did your sons have any symptoms before testing? Because I don't know if my Ped. will test based on my genes or not.

Sarah

1) I would test regardless. I did enterolab testing with the 4 of 5 of us (just not baby yet) based on my allergy tests stating I was allergic to gluten among other things. 3 out of 4 of us tested positive for active gluten intolerance and all have 2 genes that either predispose to celiac or gluten sensitivity.

2) It wouldn't hurt to get the blood panel done but if the children aren't showing symptoms it would more than likely come back negative (not always though). Some people has had problems with insurance but I don't know about that. I sent the enterolab results to my doctor but haven't heard anything from her.

3) I don't know the answer to this question...sorry. :(

Andrea,

Did your kids have obvious symptoms or were you surprised to find out they had gluten intolerance?

inquirer Newbie
inquirer
Posted

I had both my kids tested since my husband has two gluten sensitive genes and I knew they would get at least one from him. I figured I probably had some of my own celiac genes to pass on even though I hadn't been tested and it turns out I was right. I figured if it turned out they were sensitive it would make it a lot easier to make the whole house gluten free. Also, they learn the lifestyle while at home. My daughter is older and could make the connection between her symptoms and gluten. My 11 year old is having a harder time with it and I'm not pushing the issue. At home, he is gluten free and the occasional gluten treat he gets outside I'm not going to have a fit about. At least he's one step ahead from where he used to be. Also, the less gluten he eats the more sensitive he's becoming and now when his stomach hurts or he doesn't feel well after eating gluten, I can point out the cookie or whatever that he ate so he can make the connection.

My husband has a serious autoimmune disease and I think gluten played a big role in it. Stomach upsets sometimes can be shrugged off but not a life threatening illness. I don't want my children to go through what he has.

I had my kids tested through Enterolab and have pondered the issue of whether to inform their doctors. I think I want to keep the gene testing out of the charts. At this point, I don't see any real reason to tell them.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I had both my kids tested since my husband has two gluten sensitive genes and I knew they would get at least one from him. I figured I probably had some of my own celiac genes to pass on even though I hadn't been tested and it turns out I was right. I figured if it turned out they were sensitive it would make it a lot easier to make the whole house gluten free. Also, they learn the lifestyle while at home. My daughter is older and could make the connection between her symptoms and gluten. My 11 year old is having a harder time with it and I'm not pushing the issue. At home, he is gluten free and the occasional gluten treat he gets outside I'm not going to have a fit about. At least he's one step ahead from where he used to be. Also, the less gluten he eats the more sensitive he's becoming and now when his stomach hurts or he doesn't feel well after eating gluten, I can point out the cookie or whatever that he ate so he can make the connection.

My husband has a serious autoimmune disease and I think gluten played a big role in it. Stomach upsets sometimes can be shrugged off but not a life threatening illness. I don't want my children to go through what he has.

I had my kids tested through Enterolab and have pondered the issue of whether to inform their doctors. I think I want to keep the gene testing out of the charts. At this point, I don't see any real reason to tell them.

Thanks so much for sharing this. I can't tell you how much this and the other responses are helping me to sort this out. Your approach to letting him occasionally eat it while out and also letting him learn as he gets older makes sense. As you say, he is one step ahead from where he used to be. I think if I approached my son's gluten free lifestyle this way it would feel more realistic. This helps me to go forward with testing. Becuase honestly, I think the thought of taking gluten out of his life completely is slowing down my urge to test him. Terrible huh? I guess it is a form of denial or not wanting to know. Strange because I am not like this with myself. Okay, enough rambling on my part. Thank you again! :)

Sarah

AndreaB Contributor
AndreaB
Posted
Andrea,

Did your kids have obvious symptoms or were you surprised to find out they had gluten intolerance?

Neither of my kids had any symptoms and my oldest son had mild malabsorption. I'm sure it would have caused symptoms eventually that were more noticeable. We are just glad we caught it so early before much damage was done.

We were a little surprised but had been eating a lot of gluten being on the vegan diet, we've since gone back to a meat eating diet.

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

Celiac.com Sponsor (A8-M):


Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Neither of my kids had any symptoms and my oldest son had mild malabsorption. I'm sure it would have caused symptoms eventually that were more noticeable. We are just glad we caught it so early before much damage was done.

We were a little surprised but had been eating a lot of gluten being on the vegan diet, we've since gone back to a meat eating diet.

Thank you Andrea. :)

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. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,922
    • Most Online (within 30 mins)
      7,748
    gizmoziz
    Newest Member
    gizmoziz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.