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

New Member. My Daughter Has Celiac Disease?


Jackyvh

Recommended Posts

Jackyvh Newbie

Hello everyone, my name is Jacky and this is my first post here. My 5 year daughter has been having some constipation/bleeding that led us to the dr., well after running some tests I got a call yesterday saying that she had some mild positive and some positive results on her celiacs test. We were referred to a pediatric gastroenterologist, but in the meantime I was hoping someone could look at her results and tell me if this really means she has celiacs? 

 

Celiac disease panel

 
  IgA 98 25 - 160 mg/dL
  Gliavin IgGAntibody WEAK POS
  Gliadin IgG Level 26 EU
  WEAK POSITIVE:  ELISA Unit value of 20 to 30 is weakly positive for 
  Gliadin IgG antibody. 
 
Gliadin IgG antibody. 
  Gliadin IgA Antibody WEAK POS
  Gliadin IgA Level 23 EU
  WEAK POSITIVE:  ELISA Unit value of 20 to 30 is weakly positive for positive for 
  Gliadin IgA antibody. 
 
Gliadin IgA antibody. 
  Tissue Transglutaminase IgA POSITIVE
  Tissue Transglutaminase IGA Level 130 EU
  POSITIVE:  ELISA Unit value greater than 30 is positive for Tissue 
 
  Endomysial Antibody IgA POSITIVE
  Endomysial Antibody IgA 1:320
  POSITIVE:  Titer greater than or equal to 1:5 is positive for 
  Endomysial IgA antibody. 

 

 


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. There is no doubt that she is celiac with so many positive results. Do not take her gluten free until after she sees the GI doctor. The doctor may want to do an endoscopy and she needs to be on gluten for the results of that to be valid. Even then sometimes damage can be missed. After all celiac related testing is done then she will need to get on the diet. Do be sure to read the Newbie 101 thread at the top of the coping section as it will have info to help insure that she is safely gluten free after all celiac testing is finished. 

It would be a really good idea to get all other family members tested even if they don't seem to have symptoms. It is not at all uncommon for there to be other family members diagnosed once one is. 

cyclinglady Grand Master

Raven said it well!

Please keep feeding her gluten until all testing is complete! Otherwise, you will get negative results.

Jackyvh Newbie

Thanks for your responses! I'm feeling broken hearted, but I guess I shouldn't be surprised about the test results as autoimmune disorders do run on my dads side (hashimotos and psoriasis). We actually had her tested at 1 because she was colicky, had muscousy stools and completely fell of the growth chart, but that showed up negative so I had hoped we are in the clear. I guess that was wishful thinking.

 

I will definitely keep her eating regularly until we see the GI, thanks for the advice. Glad I have a place to come to for questions...

murphy203 Rookie

I hope she starts to feel better soon!! The gluten-free diet isn't something I would ever volunteer for, but it is surprisingly manageable i this day and age, and I think its a bit healthier -- mainly because processed food and fast food are less accessible. Wishing you both the best. :)

nvsmom Community Regular

Welcome to the board.  :)

 

Ditto the others.  The EMA IgA (endomysial antibodies) alone has a specificity for celiac disease at 98-100% (meaning out of 100 cases, 0-2 positives could be caused by something other than celiac disease) which is as good as it gets. If you consider that she had three other positive tests, which is quite unusual because many celiacs end up with at least one false negative test, then I would call celiac disease a sure thing for her.  :(

 

Kudos to you for figuring it out at this young age.  You will save her many future health problems by getting her on a gluten-free diet at such a young age.... I guess that's you bright side here.  Good job, Mom.

 

I agree that you need to get her siblings, and parents, checked for celiac disease.  First degree family members have somewhere between a 1 in 10 and 1 in 22 chance of developing celiac disease, which is much higher than the worldwide stat of 1 in 133.  If the tests are negative they will need to be repeated every 2 years or as soon as symptoms develop.  Unfortunately, celiac disease can develop at any time in one's life.

 

Good luck with the gastro.  Remember that the endoscopy can miss as many as 1 in 5 celiacs.  Ensure at least 6 or more samples are taken, and that she is eating gluten in the 2-4 weeks prior to testing, and that will increase your odds of having an accurate results.  

 

Best wishes.  :)

tlbpeterson Newbie

Don't feel broken hearted!  I just made pan fried chicken and mashed potatoes with gluten free bisquick instead of flour.  I'm the only celiac I have to cook for in our house but everyone loved it.   There are so, so many options available now, you'll be able to get her (and your entire family) up and running on gluten-free super quick.  

 

We're a typical crazy busy family, but now we can grab pizza from 3 different places b/c they also offer a gluten-free crust and they're ALL good.  Pizza Hut even has a dedicated gluten-free oven in the store....at least where we order from.  (just don't forget about ambient flour and contamination, when eating out though)

 

When I was diagnosed 12 yrs ago, I couldn't even find a gluten-free pasta that tasted good with a ton of sauce...now Walmart has a Great Value brand Mac n Cheese that I actually prefer to Kraft's.  And Cheerios are working on a gluten-free.  I can go on and on....

 

I had so many random tummy issues when I was a kid, we're sure it was the unknown Celiac just popping up.  With as sensitive as I am to gluten today and how easily I can get symptoms, my mom and I have wondered how I would feel today if we had known how to take care of me then.  She used to give me crackers to help my upset stomach.  (Talk about broken-hearted! She feels like she was poisoning me)

 

Don't be broken hearted!  Feel relieved that you know what's wrong with her and that you can fix it and she will feel better.  Your daughter will thank you when she's an adult.  If she doesn't, her lower GI tract sure will!    :)

 

 

 

 

 

 

 

 

Don't let it go unch

 

Once you see how much better your baby feels, all of that will go away.  And getting her (and your entire family 'established' in the life style I wasn't diagnosed until my late 28s, after I 


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



Celiac.com Sponsor (A8-M):



Jackyvh Newbie

Wow! Thanks for all of your wonderful responses:) I am feeling a little better now that the initial shock of the Celiacs test has worn off, but am anxious to get her fully diagnosed. My daughters practitioner told me not have any one else tested until we see the peds endo, but we were referred a week ago and still have not heard back from them (OHSU in Portland OR). If we have do have an endoscopy I just want to get it over with, so I can form a food plan of some sort.

squirmingitch Veteran

So call OHSU in Portland then & make the appointment. If you wait for them to call you then you could be waiting a long time. Tell them you were referred so you're calling to see when they can schedule her.

  • 1 month later...
Jackyvh Newbie

*UPDATE*

 

You guys were right, we got the results of my 5 year old daughters endoscopy and she definitely has Celiacs disease. Her duodenum showed damage(scalloping), her villi was blunted and she has increased intraepithelial lymphocytes (don't know what that means?). She also had a polyp in her colon which was removed, don't know if that is related to Celiacs though.

 

We also just received my 8 year olds blood test results and while her levels are wayyy lower, she also came up positive for Celiacs with a TTG IGA of 23 and a 1:5 EMA. All other tests were negative. 

 

Just wanted to give you guys an update, after I post my results, which were negative, I will be moving on to the coping board. Thanks again!

cyclinglady Grand Master

Here's to your family feeling better! Cheers!

nvsmom Community Regular

I hope your daughter feels better soon!

 

Are you pursuing further testing for your 8 year old?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.