16 Month Old Daughter

[Tatum]

Hi everyone! I'm new here. I have a 16 month old beautiful daughter who I believe has Celiac Disease.

I have been in & out of doctor offices with her since she was about 2 weeks old. She has a protein allergy to both Milk & Soy. She has been sick despite being on hypo-allergenic formula ever since solids were introduced. She vomits atleast once a week, and has chronic diarreah, stomach pains and has never slept through the night. She rolls around in pain in her crib screaming.

I was told she had acid reflux & was giving her Zantac from about 3 months old until 6 months old when I took her off because of no change.

Over the last 6 months it has gotten progressively worse. Just in the last 2 months alone, she has been to the hospital 3 times, pediatrician twice, naturopath twice and a walk in doctor once. The hospital told me it was gastroenteritis, then they told me it was the rotavirus. I went to a naturopath to take some blood to see if she could find anything. The results took a month to come in so the hospital on the third try referred me to a pediatrician. The Pediatrician put her on a restrictive diet free of eggs, citrus fruits, tomatoes, dairy (I wasn't feeding her this anyway) and chocolate. I did this for 3 weeks, she had no change at the time but I kept on it.

The results of the blood test came back (skin prick, IgG). She tested positive for corn, eggs, chicken, cashews and almonds. I took her off those foods as well.

2 months later there is still no change. Back to the pediatrician who then refers her to an allergist but the appointment won't be until March 10. In the meantime he told me if I suspect it could be wheat, to take her off all gluten.

I ask "I thought you had to be eating gluten to test accurately for Celiac/gluten intolerance" and he tells me "No, it shouldn't matter if you eat foods or not... it will come up in the blood test". So now I'm really confused because I asked the naturopath the same thing since milk/soy came up negative in the IgG and she said I was right... since I wasn't feeding her those, they wouldn't be producing antibodies. Conflicting information...

Anyhow, I can't stand to have her on gluten any more. She weighs 20.5 lbs (same weight since 10 months old). Her allergist appointment isn't for a month... what should I do? The poor thing has been sick long enough & it took me probably 60 different doctors until one listened & referred me to an allergist. Right now I'm changing up to 10 diapers a day of watery diarreah. Her food literally goes in & comes out within an hour and most of the time it's not even digested.

I've been researching the heck out of Celiac & everything points to it (in my humble opinion). Stomach pains, diarreah, vomitting, weight loss/no weight gain, extremely dry skin & scaly scalp, corn/egg/milk/soy intolerances. Am I going crazy?? Do you think I could be right?

She tested negative for Wheat in the IgG. what does that mean?

I am in desperate need of someone to talk to who has experience with this. I can't stand to watch my poor daughter suffer any longer and I've been telling doctors that she needs to be tested for this for a year now but no one listened. thank you!!

[lillysmama08]

  On 2/5/2010 at 9:29 AM, Tatum said:

Hi everyone! I'm new here. I have a 16 month old beautiful daughter who I believe has Celiac Disease.

I have been in & out of doctor offices with her since she was about 2 weeks old. She has a protein allergy to both Milk & Soy. She has been sick despite being on hypo-allergenic formula ever since solids were introduced. She vomits atleast once a week, and has chronic diarreah, stomach pains and has never slept through the night. She rolls around in pain in her crib screaming.

I was told she had acid reflux & was giving her Zantac from about 3 months old until 6 months old when I took her off because of no change.

Over the last 6 months it has gotten progressively worse. Just in the last 2 months alone, she has been to the hospital 3 times, pediatrician twice, naturopath twice and a walk in doctor once. The hospital told me it was gastroenteritis, then they told me it was the rotavirus. I went to a naturopath to take some blood to see if she could find anything. The results took a month to come in so the hospital on the third try referred me to a pediatrician. The Pediatrician put her on a restrictive diet free of eggs, citrus fruits, tomatoes, dairy (I wasn't feeding her this anyway) and chocolate. I did this for 3 weeks, she had no change at the time but I kept on it.

The results of the blood test came back (skin prick, IgG). She tested positive for corn, eggs, chicken, cashews and almonds. I took her off those foods as well.

2 months later there is still no change. Back to the pediatrician who then refers her to an allergist but the appointment won't be until March 10. In the meantime he told me if I suspect it could be wheat, to take her off all gluten.

I ask "I thought you had to be eating gluten to test accurately for Celiac/gluten intolerance" and he tells me "No, it shouldn't matter if you eat foods or not... it will come up in the blood test". So now I'm really confused because I asked the naturopath the same thing since milk/soy came up negative in the IgG and she said I was right... since I wasn't feeding her those, they wouldn't be producing antibodies. Conflicting information...

Anyhow, I can't stand to have her on gluten any more. She weighs 20.5 lbs (same weight since 10 months old). Her allergist appointment isn't for a month... what should I do? The poor thing has been sick long enough & it took me probably 60 different doctors until one listened & referred me to an allergist. Right now I'm changing up to 10 diapers a day of watery diarreah. Her food literally goes in & comes out within an hour and most of the time it's not even digested.

I've been researching the heck out of Celiac & everything points to it (in my humble opinion). Stomach pains, diarreah, vomitting, weight loss/no weight gain, extremely dry skin & scaly scalp, corn/egg/milk/soy intolerances. Am I going crazy?? Do you think I could be right?

She tested negative for Wheat in the IgG. what does that mean?

I am in desperate need of someone to talk to who has experience with this. I can't stand to watch my poor daughter suffer any longer and I've been telling doctors that she needs to be tested for this for a year now but no one listened. thank you!!

You poor thing!! This sounds horrible, but you are right do not take her off gluten untill she has been tested. Gluten levels are normal from 0-19 anything over that is high. My daughters levels were 33, now they are 2 so i does change dramtically. I would make an appointment with a gas. dr asap to get a celiac panal or go to you pediatricain and ask for one. I would not wait any longer this could be doing some major damage to her insides! Hope you figure things and keep us posted! Good Luck

[mommida]

She needs to be reffered to a pediatric gastroenterologist.

She must consume gluten and have enough damage to be picked up on the tests.

She will be scheduled for an endoscopy with biopsy as soon as you start working with a pediatric gastro. Call today for the refferal. If that ped doesn't give you a refferal tell the office you are firing the doctor. That usually works, doctors egos can't take it. Truthfully if it doesn't work ~you needed a new ped already.

You better really trust this ped. gastro. It is the only way you will be able to hand over your baby girl for this test.

You will be able to rule out many things that could be part of the misery for your little girl. Once you find out what is causing this, you have the power to make it better. (Our situation later turned into EE. Medical mystery ~ doctors saying literally "I don't know", "We don't know". They also said, "Try this". Well the try this WORKED. Her last scope (on WED.) showed normal looking tissue!

Hang in there kiddo. I had to go through this 6 years ago.

Super big ((HUGS)) to you!

[tarnalberry]

Since they referred you to an allergist, not a GI, I'm guessing your doc didn't even listen to the whole of your question, and said "no, you don't have to be eating it" because he/she was thinking about allergies, NOT celiac.

Honestly, since you've got four weeks until the allergist appointment, I'd put her on a strictly gluten free diet and see how she does. Was she ever able to do ok on JUST the allergen-free formula alone? If so, it might even be worthwhile to go back to that for a while, and then reintroduce solids one food at a time (no more than one a week) and look for reactions.

Granted, this is probably NOT the advice a doctor would give. But they don't like the dietary challenge as a test in and of itself all that often. :/

[Tatum]

Hi everyone, sorry it took me so long to reply. Thank you all for your responses. I called the Pediatric GI clinic at the CHildren's Hospital & was told there is a 2 year waiting list. 2 YEARS???!!! I am hoping i can get a referral sooner than later. I am going to go and see doctor number 48 or whatever it is tonight to try and get a referral for her.

I am out of options. I bought a bunch of gluten free foods & am going to start her on it myself and see what happens. It's very hard with a milk/soy protein, corn, poultry, eggs and nut allergy.... now I have to go gluten free too.

Please tell me this gets easier!!

[LJ-Mom]

Tatum,

Not sure where you live, but I found a contact at my local Children's hospital and called and called and called and called and called... and got in to see the pediatric GI specialist in 3 days instead of 6 weeks. There are doctors on call for "emergencies", so make it an emergency.

Get the name of a doctor from friends, relative, anyone and call, go to the office, do whatever it takes to be seen. If this is harder where you live, tell your doctor to send the labs in for a Celiac Panel for you now, don't stop the gluten until you've had the test but get the test now. Remind the doctor, nurse, admin that you have a child who is in pain.

Hope you get some answers soon.

Lora

[Tatum]

Ok so last night I took my little one to the ER and was told that because she isn't an "emergency" they weren't allowed to order any blood work.... however, the doctor did mention she had her own practice (she works in the ER when they are short staffed) and told me to come to her office on Wednesday and she will order a slew of blood work. I am supposed to write down all the things I suspect (or she has been tested in the IgG for) down and she will run the tests again. This means the milk/soy protein as well.

SO I guess something good came out of my 2.5 hour wait... I will update when I find out some results.

Is hair loss a side effect? She is losing her hair for the 3rd time now. She lost it twice before when she was an infant. My poor little baby

[mommida]

Sometimes getting to the right ped helps. Then they can use the inside track for an earlier appointment. (The last ped appointment, he was considering hospitalizing my daughter and ran every screening test before he let us leave.)

It gets easier. Finding the right docotrs to work with is a major key. Changing the diet right now is an issue that can possibly block your child's diagnoses.

We are on a very strict diet here too. That gets easier too! There are more products every day to choose from. Have you checked out Enjoy Life and the Cravings Place products? We don't have corn to look out for at this point, but the products are mostly top 8 free.

Here is a chocolate cake recipe that can help for Valentine's Day or birthday parties.

Quick Chocolate cake

1 1/2 cups flour (I use Gluten free pantry)

1 cup sugar

3 Tbs. cocoa

1 tsp. baking soda

1/4 tsp. salt

Mix these dry ingredients with a whisk.

In the mixing bowl add these ingredients in order they are listed.

1 cup of cold water

6 Tbs. salad oil

1 tsp. vanilla

1 Tbs. vinegar or lemon juice

Mix until smooth.

Pour into a greases 9" square pan. Bake at 350 degrees for 30 minutes.

You can double the recipe for a 9 by 13 pan, but adjust your baking time for longer.

(I haven't found the best baking time yet.)

The vinegar or lemon juice reacts with the baking soda for the cake to have some lift and is used as an egg replacement for this recipe.

Gluten free pantry flour mix ingredients...

white rice flour, potato starch,

tapioca starch, guar gum, salt (may contain traces of soy)

[ColleenNY]

Tatum,

It sounds like your daughter is going through something very similar to what my daughter went through last fall. She was diagnosed with celiac disease in October when she was 17 months old. She needs a celiac panel, since you are right a gluten free diet wilI throw off the results. I don't understand why the ped won't write the script for the celiac panel, he's not drawing the blood. Do you know of any GPs or family doctors that others in your area have had good luck with if your ped won't write the script for the blood test?

Here is the link to the NIH Celiac Awareness page, you can show this to your doctor to see if that doesn't help.

Open Original Shared Link

If you end up having to switch to a gluten-free diet, some good resources to start out with factual information are Gluten-free Living and Living Without Magazines. Also, there IS some tasty gluten-free kid food out there and a lot of foods just ARE gluten free.

Just to give you a little hope, my daughter was not only failing to thrive but had fallen off the growth charts when she was diagnosed. Just 4 months later she is happy, healthy and gaining weight. Her disposition improved VERY quickly. In addition to the gluten-free diet, the GI put her on Prevacid until the damage to her esophagous he found during the scope healed.

Good luck!!

[Tatum]

Success! I went to the appointment this morning and she ordered tests for Celiac, glucose, CBC, iron and also a RAST for milk, soy, corn and eggs. I will have to wait a few days to get the results but atleast I got her the Celiac test!! It sure was hard hearing her scream when they were taking blood though!

[Nightingale8472]

  On 2/10/2010 at 8:19 PM, Tatum said:

Success! I went to the appointment this morning and she ordered tests for Celiac, glucose, CBC, iron and also a RAST for milk, soy, corn and eggs. I will have to wait a few days to get the results but atleast I got her the Celiac test!! It sure was hard hearing her scream when they were taking blood though!

Sounds like you've finally found the right doctor! Best of luck to you and your little one!

[Tatum]

UPDATE: The results of the Celiac panel were negative. As were the IgE's for milk, soy, corn and eggs. She tested positive in an IgG for corn & eggs about a month before (?) & hasn't been on milk or soy products in a long time and no corn & eggs for a month..... so maybe thats why they were neg? Who knows...

Anyhow, I am out of options... and twice as frustrated.