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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Biopsy for my 3 year old Friday


Sarahcatherine

Recommended Posts

Sarahcatherine Newbie

My little guy has had terrible stomach trouble for about a month. The pediatrician ran a celiac panel among other things and sort of surprising to all of us it can back strongly positive today. Deamidated Gliadin IgG was 124 and all the others were just as high. So the GI doctor got us in for endoscopy right away as he thinks it is nearly certain my son has celiac and they don't want to make him keep eating gluten to wait for a GI appointment. My question is regarding how necessary it is to have all family members tested regardless of symptoms. Is this still current recommendation? Also any tips on helping a 3 year cope and learn to make proper food choices would be great. We are sad that this is what is going on but happy that there is a solution to his tummy trouble.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



TexasJen Collaborator
1 hour ago, Sarahcatherine said:

My little guy has had terrible stomach trouble for about a month. The pediatrician ran a celiac panel among other things and sort of surprising to all of us it can back strongly positive today. Deamidated Gliadin IgG was 124 and all the others were just as high. So the GI doctor got us in for endoscopy right away as he thinks it is nearly certain my son has celiac and they don't want to make him keep eating gluten to wait for a GI appointment. My question is regarding how necessary it is to have all family members tested regardless of symptoms. Is this still current recommendation? Also any tips on helping a 3 year cope and learn to make proper food choices would be great. We are sad that this is what is going on but happy that there is a solution to his tummy trouble.

I'm so sorry. This must be very hard for you and your family.

The guidelines for which family members to test and how often are a work in progress.  Currently, I believe the guidelines state to test all first degree relatives every 2-3 years or if they ever develop ANY suspicious symptoms. (Remember 50% of people with celiac don't have GI symptoms so it can go undiagnosed for years).  

For example, when I was diagnosed 10 months ago, there were just vague guidelines to test first degree relatives.  Our pediatrician emailed a well - respected gastroenterologist who basically told us there were no specific guidelines.  Now the guidelines are more specific, but I suspect that will be modified in the next 5 years as people learn more about celiac. I  had both my kids tested last year shortly after my diagnosis. My sister tested negative, but as far as I know, my parents have refused to get tested. Oi!

One thing to note is that you can't ever develop celiac if you don't carry one of the genes DQ2 or DQ8. So, in retrospect, I realized that I should have had my kids get both a routine celiac panel and the genetic testing. That way, if they are DQ2 and 8 negative, they never have to be tested again!.  In 3 years when they get retested, I'm doing both.

As for teaching your son, teaching our kids to eat healthy is one of our toughest jobs as parents and now yours is twice as hard.  I would think about making your entire household gluten free, especially if you have other kids. Kids are messy and not great at self control. The ones that can eat gluten will probably leave crumbs every where. And, the one with celiac will have less temptation if it's not around - Sometimes my kids go into the pantry to grab a snack. If there's real crackers or cookies in there, your celiac kid may not realize and eat it accidentally.  The non-celiac relatives will get plenty of gluten at other places - work, school, parties, etc. 

As for specific, day-to-day stuff, I would reach out here as well as at allergy websites. Severe peanut and dairy allergies have a lot of issues in common with us celiacs regarding safe eating outside the house, restaurants, cc etc.

Good luck!

Link to comment
Share on other sites
Jmg Mentor

Welcome :)

3 hours ago, Sarahcatherine said:

My question is regarding how necessary it is to have all family members tested regardless of symptoms. Is this still current recommendation?

Just to add to Jen's excellent post above, there is research ongoing as to what causes celiac but the genetic component means that either you or your partner or both and yours or theirs or both your respective family may have the potential to develop it, or, crucially, could already have it but not connect their experience with it.

Take a look at this overview of how it could present:

Open Original Shared Link

This list is far more extensive:

Open Original Shared Link

I don't know how strong the evidence is for all the claims in the second list, but the underlying theme, that celiac or gluten sensitivity can affect the body in a myriad different ways is undoubtedly true. Check out Mountain Man:

Open Original Shared Link

One takeaway is that tummy troubles actually make up a minority of symptoms, many won't suffer them at all. So you have a family member with a genetic condition that could manifest in multiple ways in other family members. It could be an older relative's rheumatoid arthritis, depression, skin rash or back pain is in fact caused by gluten.

My suggestion would be to consider testing for any direct family members, certainly before you go gluten free in the house should you choose to do so. If negative, don't rule out gluten becoming an issue later in life. Something to watch for. 

For other family members who may never have considered the possibility that this could be a problem for them, just let them know what you've learned. Don't alienate them but do let them know it's genetic, so they may carry the gene, it presents in many different ways, or indeed silently, and if untreated consequences become increasingly serious. Make sure to stress that anyone who thinks they may have an issue SHOULD NOT GIVE UP GLUTEN as this would throw the testing process into doubt. If they choose not to test or finish and testing is negative they still have the option of trialling the gluten-free diet. 

Read up on this site and elsewhere eg: Open Original Shared Link and find more good advice and links here:

Best of luck to you and the little guy. It may not feel this way but identifying this at such an early stage is a massive win for you both and you and your doctor's vigilance have paid off in a big way!

 

 

Link to comment
Share on other sites
frieze Community Regular

you DO NOT need one of those two genes.  there is a small but real group that do not have them, and ARE celiacs.  Europe recognizes DQ9, and others, besides the DQ8 and DQ2

Link to comment
Share on other sites
cyclinglady Grand Master
9 hours ago, TexasJen said:

 

One thing to note is that you can't ever develop celiac if you don't carry one of the genes DQ2 or DQ8. So, in retrospect, I realized that I should have had my kids get both a routine celiac panel and the genetic testing. That way, if they are DQ2 and 8 negative, they never have to be tested again!.  In 3 years when they get retested, I'm doing both.

 

I thought about getting the genetic testing for my kid so she would not have to go through antibodies testing every few years or so (sooner, if symptoms present), but someone on this board reminded me of our healthcare system.  So, we know that 30% of the population carries the gene that could develop into celiac disease.  But the health insurance industry, just might frown on insuring a person who has the potential to develop it.  We are self-employed.  Just a few short years ago, I was (uninsurable) because of Hashimoto's, a finger infection (do not swim with a cut), and Rosacea that resolved without systemic medications.  My doctor even wrote a letter telling the insurance companies that I was a triathalete!  But no matter.  I was told I could take systemic medications that could damage my liver even though I never did take them.  We are talking big health insurance companies here!  

Not to be a fear monger, but who knows what will happen with our healthcare situation in the US?  Some non-medical person may interpret a genetic test as having celiac disease.  DENIED! Her own doctor has witnessed her Raynaud's, but He did not put it in her chart.  There is no cure for it.  Why get a label?   (He is the kind of doctor who asks what your expectations are for the visit which is so rare and he is runs the entire very large practice, so I am sure he knows the insurance company drill).  

 I will test my kid (antibodies) one more time before she turns 18.  She can decide to get the genetic testing on her own.  

Link to comment
Share on other sites
kareng Grand Master

I have Celiac.  Its in my medical record.  So I had the gene test.  That told me what I needed to know about my kids' chances of getting Celiac.  

Link to comment
Share on other sites
Gemini Experienced
5 hours ago, cyclinglady said:

I thought about getting the genetic testing for my kid so she would not have to go through antibodies testing every few years or so (sooner, if symptoms present), but someone on this board reminded me of our healthcare system.  So, we know that 30% of the population carries the gene that could develop into celiac disease.  But the health insurance industry, just might frown on insuring a person who has the potential to develop it.  We are self-employed.  Just a few short years ago, I was (uninsurable) because of Hashimoto's, a finger infection (do not swim with a cut), and Rosacea that resolved without systemic medications.  My doctor even wrote a letter telling the insurance companies that I was a triathalete!  But no matter.  I was told I could take systemic medications that could damage my liver even though I never did take them.  We are talking big health insurance companies here!  

Not to be a fear monger, but who knows what will happen with our healthcare situation in the US?  Some non-medical person may interpret a genetic test as having celiac disease.  DENIED! Her own doctor has witnessed her Raynaud's, but He did not put it in her chart.  There is no cure for it.  Why get a label?   (He is the kind of doctor who asks what your expectations are for the visit which is so rare and he is runs the entire very large practice, so I am sure he knows the insurance company drill).  

 I will test my kid (antibodies) one more time before she turns 18.  She can decide to get the genetic testing on her own.  

It is illegal in the States to discriminate against anyone with a pre-existing condition.  No health insurance company can do that.  That has been on the books since the ACA went into effect.  However, the bigger concern is what they can charge you if you are older with a pre-existing condition.  You are correct about not knowing how this will all play out because neither side is doing a very good job at the moment.  :angry:  Isn't it bizarre that they would insure you if you took the medicine that might screw up your liver but they don't care if you really take care of yourself?  I have run into that problem shopping for long term care insurance. Bastards......

The best way to get around this whole problem is to pay out of pocket for gene testing.  It is not expensive.  That is what I did so the insurance company never saw the results. I also paid for my Celiac panel out of pocket also. It says Celiac in my medical record but there are no testing results to back it up. 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



pschwab Enthusiast

We had almost the exact situation last April. My then two year old was having bad stomach issues, so our pediatrition ran all the tests. His ttg levels came back at 300. With such a high indicator of celiac, and the fact the gi couldn't run a biopsy for three months!, we immediately went gluten free and did genetic testing. The diet change showed an immediate change! When his genetic tests came back positive for celiac, he was able to get a definitive diagnosis for celiac. We chose to have our immediate family undergo the genetic testing as well so our other kids would know if they have to be on the lookout for celiac symptoms or not. Our 7 yr old and my husband have the gene, while my five year old and myself do not. So basically we are keeping an eye on the two and will redo the celiac panel every three years or so unless symptoms arise.  We are expecting another baby and plan to have her tested in the first 2-3 years of life. In my personal opinion, forewarned is better. We also immediately went completely gluten free in our home. As someone mentioned above, his age was a huge factor as well of the age of our other kids. They are just not careful enough even when they try. I've seen plenty of posts about adult households where celiac family members are accidentally glutened repeatedly and it's not worth it to us to put him at any sort of risk. The rest of our family continues to eat gluten outside of the house. Going out to eat has been interesting. We have found three restaurants within 30 minutes of our house that are celiac friendly. We rarely go out to eat anymore based on the inconvenience of it being farther away, but we still make a habit of it so the little one doesn't miss out. We have also tried to continue going to places like McDonalds so he doesn't miss out on the play place experience he so loves. His siblings eat McDonald's food and we pack him a celiac safe meal, and I freak out wiping down the whole area and his hands as he touches way too much for my comfort level. :) We are lucky to have a very cooperative "celiac kid" who understands all these things, and his siblings are very careful when they consume gluten. One of our new favorite books is "The Celiac Kid". We can discuss how special our little guy is but also how he's no different from anyone else if we are careful. I'm sure many people will think we have gone overboard with how cautious we are, but when he's in these huge years of growth and development there is no way we'd risk any cross contamination. Sorry this is so long! The transition will be a bit overwhelming at first, but you'll be surprised how easy it all is after a couple months. Keep in mind school/day care will present its own challenges. Good luck!!

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    2. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    4. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    5. - trents replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
    • trents
      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
×
×
  • Create New...