• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
megsybeth

Thoughts On My Son's Most Recent Labs?

Rate this topic

Recommended Posts

So I've posted quite a few times about my celiac diagnosis process and that of my son, who's four. But just for background, he's had failure to thrive, markedly small stature since he was one. I thought he was tested for celiac because it was discussed but looking back see all they did was stool testing for fats. In addition to slow growth, he has motor and speech delays, weak (stained) teeth, dark circles under the eyes, pale skin and starting in August has had terrible diarrhea frequently (constantly until we took him off gluten following endoscopy). He's very clumsy (and so am I).

I started reading about celiac and also realized I have it, which blood tests confirm across the board (deciding on the endoscopy still). I saw a celiac specialist who confirmed it and have my boys scheduled to see a pediatric celiac specialist at the end of the month. His GI swears he doesn't have it based on biopsies (more than six of duodendum). But she also doesn't really offer any other idea of the problem (I think she actually thinks I'm making up the diarrhea to a degree).

After some nagging she did run another celiac panel for me (the first she ran through quest was negative, but not the full panel).

Here are his results from Prometheus:

Notes: "Results may support a diagnosis of celiac", "Serological markers for celiac disease detected" (I'm no expert but I think I can interperet this part...)

DGP lgG .5 EU/mL: negative: referenc range <4.9EU/mL

DGP lgA 15.0 EU/mL: positive: reference range <6.1 EU/mL

TTG lgA .4 U/mL: negative; reference range <10.3 U/mL

EMA lgA: negative: Reference range "negative"

Total lgA: 294 mg/dl (3-13 years 41-395 mg)

Genetics: DQ2/other low risk gene, relative risk low

I think it looks like a duck, quacks like a duck...No matter what I'm doing gluten free indefinitly with him. I would like to have a clearer diagnosis for people who will ask about it (meaning people who might be feeding my son and think I'm crazy) but I believe this kid has celiac.

Also, we saw the GI two weeks ago today, went gluten free about 12 days ago, following endoscopy. According to her nurse he's grown 3/4" in that time. Guess it was the Halloween candy?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Positive DGP with obvious symptoms and a duck for a Mom - I'd say you've got a duckling with a great Mom!

I was only weakly positive at 43 with total villous atrophy - my teen sons had different symptoms for years, but both tested negative upon my diagnosis. They were older so each removed gluten at different times and each has had symptom resolution - had they decided to wait until they tested clearly celiac - they would have likely ended up as sick as myself and my eldest daughter.

The tests are far from perfect.

Keep up the great work and watch him grow :)

  • Upvote 1

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
      108,914
    • Total Posts
      943,473
  • Member Statistics

    • Total Members
      67,073
    • Most Online
      3,093

    Newest Member
    Guillermo Saenz
    Joined
  • Popular Now

  • Topics

  • Posts

    • One other thought to consider is other food allergies/intolerances you may have that you didn’t know of before that could be causing this change.  Is there any food that you may have added in or increased the frequency of eating since removing gluten from your diet?  I know this has happened with me where I took our gluten, started eating more rice and still getting sick till I figured out I have a rice allergy as well!
    • Hey I’m new here too- but totally get what your talking about! I have some friends that claim to be ‘gluten free’ but if they are hungry will eat a piece of bread and it can be frustrating to have them later complain to you about how hard it is to eat a gluten-free diet!
    • I get how you feel, I was diagnosed almost 5 years ago and still find challenges to overcome especially when traveling with my friends.  I get the feeling that sometimes it can seem to overshadow your life, but for me it has really shown me who some of my closest friends are as well.   My friends always find it funny and joke that I eat my way thru school classes, because I ALWAYS have ‘me proof’ snacks on me to eat so I’m never hungry when I’m away from home for longer than I thought, or can’t get food while we’re on the go!!
    • Sure, you should consider getting tested for celiac disease.  There is no test for Non-Celiac Gluten Intolerance or Sensivity.  However, you have to be consuming gluten daily for at least 12 weeks as ALL celiac tests require you to be consuming gluten.   Learn more about testing: http://www.cureceliacdisease.org/screening/
    • Welcome Isabel!   It is hard having celiac disease, but after a while it does get easier.  Just so you know, I am an adult, but I am a Girl Scout Leader, have a daughter who is 16 and one of my daughter’s friends was just diagnosed with celiac disease just three weeks ago!   Social events can be hard, but you can bring some food that is actually better than just snacks.  If I am going to a friends house, I can bring food and reheat it in the microwave.  I also have a good thermos that I can fill with Spaghetti, chili or soup.  I also bring ice cream and keep it in the freezer.  One of our troop members is really allergic  to nuts and milk, yet all her friends (true friends) accommodate her.  For example, I make some pretty good gluten free, dairy free, and nut free brownies for her.  At our troop meetings or camping, we never bring nuts.  She is never left out.  Now, we are working with our Newbie celiac friend.   My daughter and I took her a care package, so that she can start baking gluten-free chocolate chip cookies.   Short!  That is me.  Not everyone with celiac disease is short.  You may find that you end up growing more, but remember, genetics plays into it too.  My brother grew after high school!   I think that you probably see your doctor often, because they want to insure that you are following the gluten free diet.  Consider yourself lucky because some people do not have access to medical care.  They must manage this all on their own.   Take care and be safe!  Do not give out too much private information (did I say I was a Mom?”)  be patient and some other teens should show up in the other sections, but you can always ask anyone here a question.   P.S. Check out celiac summer camps.  Google it.  Imagine a ton of kids just like you!    I wanna go!    
  • Upcoming Events