New Member. My Daughter Has Celiac Disease?

[Jackyvh]

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. 

 

 

[ravenwoodglass]

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]

Raven said it well!

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

[Jackyvh]

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]

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]

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]

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 

[Jackyvh]

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]

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.

[Jackyvh]

*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]

Here's to your family feeling better! Cheers!

[nvsmom]

I hope your daughter feels better soon!

 

Are you pursuing further testing for your 8 year old?