I need some suggestions

[mommy-6]

First a background... my grandma, my mom and I all have Celiac, some of my cousins have children with Celiac also, but so do their non blood spouses and no one else will get tested. Anyway... I have a little girl who just turned 3 last month and has had chronic diarrhea for awhile (year +), never poops solid and complains daily of tummy aches, I had her tested for Celiac at her 3 year well child visit last month. The doctor said her Celiac test results were normal and her iron was a little low, then told me to give her an iron supplement. When I inquired about the diarrhea in combo with low iron (which was 11.0 so not significantly low since normal is 11.5-13.5), she recanted and said her iron is normal, she's not anemic yet, don't worry about it. She had average iron levels 2 years ago. My daughter is the farthest thing from a picky eater and eats iron from a variety of sources, meat and plant, so it shouldn't be diet related. She also said she isn't sick, so she doesn't need to see a GI.. which requires a referral so I can't just see one anyway. However, she told me to give her a lactose free diet for awhile to see if there was improvement... she has gone weeks without dairy in the past with no changes in her BMs, so I highly doubt it to be lactose intolerance. She also suggested that I could retest in 6 months... not sure if she meant for iron or Celiac, but I intend to do both. So, I plan to see a different pediatrician at a different clinic in a bigger city... one that actually has a pediatric GI just in case (though he is currently booking into February, so this is going to be a long process).

My question... what labs should I request to make sure I am getting the most out of the blood draw? I hate poking my children repeatedly because tests are incomplete and I know Celiac isn't something many doctors understand... my GI being one of them ironically. They have only ever tested TTG IgA and TTG IgG, but with the possibility of false negatives, I want to make sure to have a complete Celiac panel. If her iron is low, there's a possibility she has other low vitamin and mineral levels. Celiac or not, the kid has some GI issues that need to be addressed, but I definitely need to confidently rule out Celiac... 

Thank you for your time!

Christina

[Darren]

I'm no expert on the bloodwork but you can also try the at home genetic test to find out for sure if your girl even has the gene that is required to even develop celiac. That way you find out if you even need to bother with blood tests. No gene no Celiac potential. It's from glutenpro and the test is genesure. It's from Canada and it works. A little pricy but gives you good info and may prevent paying for future bloodwork she doesn't need if she doesn't have the  gene. They also have at home blood test which is less invasive and cheap. I'm going to use the genetic test on my 3 year old since I've been recently diagnosed.

[cyclinglady]

I think you need to ask your GP for the complete celiac panel.  Kids can test out differently especially toddlers.  The DGP is better for some unknown reason.  You can google that and take it to your doctor.  I only had the DPG IGA come back positive yet I had moderate to sever intestinal damage.  It is how I yest even on follow-up testing!  My TTG tests were negative.   The TTG tests catch about 95% of celiacs but not all -- especially very small children.  

Like most, I was undiagnosed for years.  I did not appear to be sick. Heck,  I was training and riding century rides (100  miles).    I think our bodies do a great job of compensating!  

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

 

[mommy-6]

15 minutes ago, cyclinglady said:

I think you need to ask your GP for the complete celiac panel.  Kids can test out differently especially toddlers.  The DGP is better for some unknown reason.  You can google that and take it to your doctor.  I only had the DPG IGA come back positive yet I had moderate to sever intestinal damage.  It is how I yest even on follow-up testing!  My TTG tests were negative.   The TTG tests catch about 95% of celiacs but not all -- especially very small children.  

Like most, I was undiagnosed for years.  I did not appear to be sick. Heck,  I was training and riding century rides (100  miles).    I think our bodies do a great job of compensating!  

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

 

I didn't have obvious symptoms of celiac either, I found it trying to rule things out for what ended up being muscle tension. My mom only found hers because I made her get tested when they found mine, and my grandma's only symptom was anemia. Our bodies are definitely good at coping. Thanks for the list!

[cyclinglady]

How is your relationship with your GI?  Could he or she order if your GP resists?  My GP did not hesitate to check my kid for anemia (my main symptom) and ordered the complete panel and she was symptom free.    I know cost can be an issue for both practitioners and patients, but celiac strongly runs in your family!  

[mommy-6]

19 hours ago, cyclinglady said:

How is your relationship with your GI?  Could he or she order if your GP resists?  My GP did not hesitate to check my kid for anemia (my main symptom) and ordered the complete panel and she was symptom free.    I know cost can be an issue for both practitioners and patients, but celiac strongly runs in your family!  

I don't have one, the one I was seeing when I was diagnosed is completely Celiac illiterate and a complete idiot besides. I did see one to actually go through all my test results that the first GI didn't explain and he ran some vitamin labs, ran an update on my antibody levels and a referral to PT, I only seen him once. I have no one to follow up with. Actually, I started seeing the GI trying to diagnose a hypertonic pelvic floor, and I have no one helping me with that anymore either now that my PT gave up... I really hate our medical facilities around here.

When I brought the kids into the pediatrician for testing... she didn't even understand why I was testing them, I don't think she understands the disease at all either. After it came back negative, she said if she ends up anemic in the future they will look for UC and Crohne's Disease, because she doesn't know about false negatives, or that children can be hard to diagnose or apparently that it can develop down the road. She told me my kid isn't sick enough to see GI. Unfortunately, the kids original ped knows about Celiac, but she was no longer a good match for my children and is actually rather disrespectful. So now, I need to find a good ped who understands that Celiac is real, then pray they will give me the stupid referral to GI.. because honestly, I can't even potty train this poor child because of her diarrhea... she's so excited to pee in the toilet but gets so frustrated when she poops her pants in mid play then asks for a diaper after the 3rd accident. I need help even if it's not Celiac. I just can't believe how hard it is to get doctors to do anything without multiple trips to several different doctors.

[manasota]

Gosh, I'm sorry you're having so much trouble.  I agree that navigating the health care system can be a real nightmare.  One thing that has helped me is that I check out all the docs in my area thoroughly on the internet before I even contact them.  I talk to friends and neighbors for their opinions.  I just keep researching as much as possible, then bite the bullet, and make an appointment.  Sometimes I can tell a lot just by talking to the receptionist.  How helpful, courteous, patient are they?  Oftentimes, the doc has input as to who works in their office.  Then, if the doc doesn't meet my needs (whatever that may be), I look for a replacement.  Nothing easy about this; but I have never regretted the effort spent.  Good luck!

[maseymn]

I went weekly to my GP until she took me seriously. I'd go in, she'd say try this, try that, I'd go out and schedule an appointment for the next week. We did this for about a month, when she finally said "You're serious about this, aren't you?" (My main symptom was abdominal pain that nobody could figure out). She ordered an abdominal CT and blood tests for, among other things, celiac. I've thought for a long time my daughter has it, but she's tested negative every time, and won't try a gluten free diet just to see if she feels better. I'd suggest starting with a food and symptom diary for a week on a normal diet, then a food and symptom diary for a week on a gluten free diet to see if there is a change. It would be even better if it was dairy free (per the docs recommendation) as well as gluten free. If symptoms get better on dairy free/gluten free, then reintroduce gluten but keep her off dairy (since that's the docs current recommendation). If symptoms return, you know it's the gluten and not the dairy (thought it could be both). Good luck. You'll need to be proactive and persistent.

[ahearnsberger]

I would recommend a saliva or stool test from glutenpro, as discussed earlier, that you can do at home for your daughter. My journey to diagnosis was my own because no docs  understood or really cared to help me get to the real issue. Anemia and other deficiencies are definite symptoms. My guess is her gut is very irritated and inflamed. She may not be absorbing other vitamins because of it. Work around the Drs if you have to. I had diarrhea for over a year and my Dr just shook his head. The tests are easy and conclusive.