Think Daughter Has Celiac Disease

[caa0827]

My daughter just turned 5 in November. She was born at 7lb 6oz, but stayed in newborn clothes for 3 months. Since then her growth is very small. At 5 she is slightly less than 38 inches and only 28lbs. Her Drs. don't seem concerned. She has complained that her stomach hurt, but never really acted like it, so I have been passing it off as attention. Lately she has been telling me she has swallowed her throw-up. Since I suffer from Acid Reflux, I figured this most be the problem. We took her to the Drs. and I am currently keeping a log of her food, and giving her Zantac before meals. My husband was talking with someone at work, and they mentioned Celiac Disease. I've heard of this, but never knew what it was, so I looked it up.

They symptoms my daughter has our:

Acid Reflux

Short Stature

Canker Sores

Rash

Muscle weakness (needs OT and PT)

I asked the Dr. to test for Celiac Disease but the test came back negative. I have an appointment on Tuesday and will ask more questions, but just wondering what everyone else thought. My gut tells me the test is wrong. I'm just not sure what to think.

Thanks

Carrie

[mommida]

You should probably be reffered to a pediatric gastroenterologist. She should get the Celiac panel run while waiting for the appointment (usually a 3 month wait).

She will most likely need an upper endoscopy. These are also symptoms of Eosinophilic Esophagitus. There is now evidence that there is a correlation between Celiac and Eosinophilic Esophagitus.

it is important that she keep eating gluten for the testing. So hang in there and get those Dr. appointments going!

[Roda]

What tests did the doctor run? A lot of the time doctors don't run the full panel. Here is a list of all the tests.

total IgA

IgA/IgG tTG(tissue transglutaminase)

IgA/IgG DGP(deamidated gliadin peptide)

IgA EMA(endomysial antibody)

Testing in children can be unreliable yeilding a higher rate of false negatives.

In hindsite I think my youngest had celiac since an infant(horrible reflux, food issues and very sickly). At age 3.5 he was blood tested and was negative(after my diagnosis). At age 5.5, after 6 months of new symptoms he was positive on his blood work. He has been gluten free almost 15 month now and is doing wonderfully. He has grown so much and put on weight. He no longer has stomach aches or reflux.

[caa0827]

Had my daughter's appointment today with her pediatrician. She said that the Celiac tests all came back within normal range including the IgA. She also said that she is a little bit anemic and wants me to start her on a multi-vitamin.

Isn't anemia another sign of Celiac?

However, the Zantac she gave us a week ago for her reflux is not working at all, so she is now prescribing Prilosec. I have to wait a few days for the new Med because we need pre-authorization from the insurance co.

She also referred me to a GI specialist. However, because of her age, their is only 1 place for her to go and we cannot get an appointment until April 2. I know that is only 2 months, but watching my daughter is pain is so hard. This was my main goal during the appointment, so I am happy about that.

My plan: In a few days we will start the new meds and if they don't work, then I am going to go ahead and start her on a Gluten Free diet. I understand I would have to have her go back on it if the GI Doctor wants to run more tests, but I just cannot wait until April, and then wait for the test and then results for her to start feeling better.

Thanks for reading.

Carrie

[Avalon451]

You might want to take the April 2 appointment, then call every day to see if they've had a cancellation. It's possible that when they see how desperate you are that they'll manage to work you in. My husband did this when he really needed some relief from a specialist.

Best of luck! I sure hope your little girl gets some help soon and feels better!

[mommida]

I know it's hard when your baby is sick. Please wait on the gluten free diet for the testing. Keep a food journal with the "normal" diet including reaction/mood check. There is a rather long list of illness that presents the same as Celiac symptoms. H. Ployri, parasites, SIBO, Eosinophilic Esophagitus or other EGID, and so on. An upper endoscopy with biopsy can help rule these things in or out. (and gluten can cause symptoms as the trigger for Celiac, DH, gluten sensitivity and Eosinophils.

If you start a gluten free diet the doctor will just tell you to do a gluten challenge for testing. you'll be set back for weeks and may make your child severely ill. The best thing to do is get an accurate diagnoses as quickly as possible. Make contact with the gastro's office and see if there are any tests that can be run from the ped.'s office before the appointment. (i.e. stool sample for parasites)