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:
    Support Our Content
    eNewsletter
    Donate

What is one of the best ways your parents supported you as a kid?


416510

Recommended Posts

416510 Rookie

Or, what do you wish they did differently? My 3.5yo son may have celiac (His pediatrician has to get the labs checked by a specialist because his iga is 92.5 and she said under 20 is normal and over 200 is celiac? Any thoughts on THAT?) Anyway, I want to be prepared. I have type 1 and I know how beneficial it is to try to be one step ahead of your care team. What resources do you recommend I read up on? What apps, cook books, any tech or other tools would you recommend? Any advice for how we help our toddler into this new normal? PS We live in Germany.


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Please see my response to your other post.

To that I want to add that until all testing is complete, including an an endoscopy/biopsy, your son should not start reducing gluten intake. Doing so will invalidate testing if you intend to pursue it further for confirmation.

Scott Adams Grand Master

I saw your other post and I think you mean that his tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease was 92.5, but they also do a total IGA test for reference, but I think you mean his tTG-IgA results were high. 

If your son does have celiac disease I think the best support for him would be to fully understand the gluten-free diet, and about hidden gluten in foods, supplements, medications, etc., and teach him about this as well:

 

416510 Rookie
1 hour ago, Scott Adams said:

I saw your other post and I think you mean that his tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease was 92.5, but they also do a total IGA test for reference, but I think you mean his tTG-IgA results were high. 

Yes, that makes sense. The doctor was not talking to me in their mother tongue so it was a bit unclear. Thanks very much for the resource! In your response to my other post you say you would not be keen to get the endoscopy. While I agree that seems unpleasant would it be beneficial to rule out non-celiac gluten sensitivity and simply confirm such a life-altering diagnosis? Thanks again.

trents Grand Master
1 minute ago, 416510 said:

Yes, that makes sense. The doctor was not talking to me in their mother tongue so it was a bit unclear. Thanks very much for the resource! In your response to my other post you say you would not be keen to get the endoscopy. While I agree that seems unpleasant would it be beneficial to rule out non-celiac gluten sensitivity and simply confirm such a life-altering diagnosis? Thanks again.

It would be but with such a strong positive tTG-IGA score at such a young age, there is not much doubt in my mind that he has celaic disease. There are benefits to getting that confirmed as an official diagnosis, however. For one thing, if it's official, doctors can't blow it off as just another "fad" disease. Many in the medical community have "attitudes" about celiac disease. The other potential benefit is that some countries provide stipends of sorts (i.e., the UK) to help offset the expense of buying gluten free foods.

Just a little elaboration on what Scott mentioned about the IGA score. It was not entirely clear which IGA score you were referring to. There is more than one possibility. There is more than one IGA test that can be run for celiac disease so when you just say "IGA" it may not be clear if you are referring to "total IGA" or one component such as the tTG-IGA. We assumed you were referencing the tTG-IGA since you made mention that it wasn't 10x the normal reading. We are familiar with the practice in Europe of declaring a celiac diagnosis without biopsy if the tTG-IGa is 10x normal.

There are also other blood tests for celiac disease that are DGP and IGP based instead of IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

When these multiple tests for celiac disease are ordered we call that a "full celiac panel".

416510 Rookie
15 minutes ago, trents said:

The other potential benefit is that some countries provide stipends of sorts (i.e., the UK) to help offset the expense of buying gluten free foods.

Thanks - this well may be similar in Germany and I hadn't thought of that. Although I have started to worry about lunch at daycare.

Scott Adams Grand Master
6 hours ago, 416510 said:

Yes, that makes sense. The doctor was not talking to me in their mother tongue so it was a bit unclear. Thanks very much for the resource! In your response to my other post you say you would not be keen to get the endoscopy. While I agree that seems unpleasant would it be beneficial to rule out non-celiac gluten sensitivity and simply confirm such a life-altering diagnosis? Thanks again.

Children's villi recover very quickly, and over the many years here we've seen plenty of kids get negative biopsy results who had positive blood tests. In the end a gluten-free diet helped with their issues, even though an official diagnosis could not be made. You may want to proceed with the biopsy, but I would still try out a gluten-free diet for a few months, even if the biopsy results are negative. Also, a minimum of 4-6 samples should be taken, and we've see many times on this forum where they only take 1-2. 


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



Celiac.com Sponsor (A8-M):



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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,790
    • Most Online (within 30 mins)
      7,748

    shannonbaldock
    Newest Member
    shannonbaldock
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • thejayland10
      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
    • thejayland10
      Thank you for the clarifcation, how can I get to the bottom of this as to why they may be elevated even on a super strict gluten-free diet? 
×
×
  • Create New...