Hi New To Forum And Have Questions

[carolinse]

I have a 16 month old daughter who has since birth been a very colicky fussy baby. She was 8 lbs 8 oz and 20 inches at birth, 2 weeks early. I exclusively breastfed and did the whole taking things out of my diet when she became colicky (this is my second child). It did not make a difference. Her colic lasted about 4 - 5 months. I also noticed that she did not nurse much, as I had to empty out by pumping which I never did with my first daughter. My pediatrician suggested I introduce cereal at 4mths, which I did not since Emma had not shown signs that she was interested in eating foods, she has gained weight pretty nicely, but is on the petite side. She has always had funny poops, lots of them, when she was only on breast milk they tended to be more greenish that yellow and also when I introduced cereals to her at 6 months because she was ready she had horrible tummy pains and colic. I waited about 1 week before I tried oatmeal, had same reaction with the exception that she threw up, I again waited about a week and gave her barley. This did not work. I contacted my pediatrician and was told to avoid the cereals and go straight to baby food. I did the same thing as with my oldest and bought all organic fruits and veggies and made my own baby food. I had the same problems with her not tolerating foods. It eventually got better, although she ate very little. I had also noticed that in the evenings she would wake up crying so I would get and her and breastfeed her since I was breastfeeding her on demand, she would nurse and go back to sleep, but wake up again 30 minutes later screaming in pain, arching her back and throwing her head back. I called my pediatrician and was told to come in. She was seen and they could find nothing wrong with her, I asked if she could have silent reflux and was just told that she was just a fussy baby and would outgrow it, she was 11 months at the time. I had also explained to my pediatrician that I could not get Emma to eat anything without giving her after each meal homeopathic drops for colic that I got at our organic food store and that she ate small amounts but ate throughout the day. She found this unusual but said that it couldn't hurt her and if it made her feel better to continue. I finally went to a GI who finally diagnosed her with silent reflux and put her on Prevacid twice a day. Within 3 days Emma was a totally different child, she was eating much better. With all of this she still has funny poops, they are always mushy, sometimes oatmeal consistency and grayish in color and have a very particular smell which sometimes is quite awful, she also seems to pass through a lot of undigested food and sometimes she has poops that are kind of sandy, very difficult to wipe off and have black specks in them. She recently had a bought with RSV and was not eating at all, she was taken off all dairy and placed on soy as it produces less phlegm, since I had stopped breastfeeding her about 4 weeks ago due to me getting pneumonia and being placed on a lot of meds. She was given antibiotics since she also happend to have an ear infection, her GI had me give her probiotics to help minimize the effects of the antibiotics on her tummy. I am extremely frustrated because deep down I know that there is something wrong with her, she has a distended tummy although neither her pediatrician nor her GI see anything wrong with it. She is also a horrible sleeper, and wakes up grunting, crying and kind of twisting herself as if her tummy hurt. I am sorry I am rambling on, but I happened upon this site while reasearching causes for Emma's symptoms and read some of the postings and a lot of them sounded like her.

I have an appointment this Tuesday with her GI and will have a long conversation with him about Emma and the many problems I have with her related to her eating, and tummy issues. I would like suggestions as to what questions I should ask. I don't believe that there is anyone on my side or my husband's side that has Celiac Disease but we are not 100% sure. Any help is greatly appreciated.

[shan]

Wow! You sound like you have had a run! Why don't you insist on blood work and see what happens then, or try her yourself on the gluten free diet and see if there is a change. Personally i would first see if any tests came out positive coz she would have to be on gluten in order for the tests to be accurate. And its much harder to go back on gluten

Let us know what happens and good luck!!

[BRob66]

Wow! You sound like you have had a run! Why don't you insist on blood work and see what happens then, or try her yourself on the gluten free diet and see if there is a change. Personally i would first see if any tests came out positive coz she would have to be on gluten in order for the tests to be accurate. And its much harder to go back on gluten

Let us know what happens and good luck!!

Have you considered taking her to a naturopathic doctor and maybe trying a saliva test for celiacs? I have been diagnosed this way and was off gluten for 2 months before the test. I tested extremely high positive and the naturopath says he sees alot of false responses from the blood work and the endoscopy you have to be on gluten for as well. Maybe something to consider. I would try her on a gluten free diet and see. As well she could be reacting to soy,dairy,citrus and eggs. These are all things i also have to be off of with the celiacs. Good luck!!!!!

[Lisa]

Have you considered taking her to a naturopathic doctor and maybe trying a saliva test for celiacs? I have been diagnosed this way and was off gluten for 2 months before the test. I tested extremely high positive and the naturopath says he sees alot of false responses from the blood work and the endoscopy you have to be on gluten for as well. Maybe something to consider. I would try her on a gluten free diet and see. As well she could be reacting to soy,dairy,citrus and eggs. These are all things i also have to be off of with the celiacs. Good luck!!!!!

BRob66,

A saliva test cannot diagnose for CELIAC(no S).

There are three means to diagnose:

1. Celiac IgA Panel - Blood Test

2. Endoscopy exam/Biopsy

3. Positive Dietary Response

Carolinse,

A blood test would be a start, but you must understand that they are known to be unreliable in children as young as yours. You also might look into gene testing. It can be done through Enterolabs.. Many here have taken that road. And thirdly, you can take your little one off of gluten and see is there is a positive dietary response.

I would encourage you to speak to your doctor. We are not doctors and there may be an unrelated issue that has nothing to do with Celiac.

I hope your find your answers.

[carolinse]

Thanks to all who responded. I will insist on her GI to do all the lab work to find out what is wrong with her. I have been dealing with this since she was born, first with the never ending colic, she had from the moment she woke up until she went to sleep at night. I would leave my house to take my oldest Amanda to the JCC Early Childhood Development and pray that I would get there without having to pull over many times to calm her down. I really hate it when she cries when she is in pain and we are in the car, because all I want to do is hold her and comfort her. I am just hoping that I finally get to the bottom of her tummy problems. What kind of foods are out there that are gluten-free? I am totally blind here regarding this. I would welcome any suggestions. Thanks.

[ryebaby0]

I just wanted to second Momma Goose's post --- bloodtest diagnosis of celiac is very difficult under the age of two. So much so that it is unlikely that you will want to put yourself and her through the "stick" in order to get a suspect result (she could "test" negative and then what?)

The most straightforward approach is to remove gluten from her diet and see what happens. In the end, that will show you more than any test can confirm until she's over 24 months. There are lots of "alternative" labs, methods, etc. and people have varying amounts of confidence in them so take what you read (even here, even me!) with a grain of salt.

Gluten is in soy sauce, cereal, bread. It's in cream sauces, soup, and Doritos. It's in some lunch meat, some candy....this is not a simple thing. It's certainly do-able, but it's not simple at first. Gluten free prepared foods are expensive (a bag of Glutino pretzels, for example, is $8 at my grocery).

You also should consider that it is some other food or digestive issue -- I can't believe I'm saying this, but celiac right now is something of a "vogue" disease (where was the media 4 years ago!) and you wouldn't want to settle for anything less than a thorough investigation of her symptoms! Get a doctor who you trust -- remember to advocate firmly for your child, and that the doctor works for YOU! Good luck! Let us know how it goes...

[Ursa Major]

I just want to mention that gluten WILL be in your breastmilk if you eat gluten containing foods. So, if you are going to give the gluten-free diet a try for your daughter, you will have to eliminate gluten from your diet as well, if you still nurse her.

Her symptoms could be caused by a combination of soy, gluten and dairy. Which is very common with celiac disease.

Soy formula is about the worst food (if you want to call it a food) for babies there is. I don't recommend using it at all.

[skikat]

Thanks to all who responded. I will insist on her GI to do all the lab work to find out what is wrong with her. I have been dealing with this since she was born, first with the never ending colic, she had from the moment she woke up until she went to sleep at night. I would leave my house to take my oldest Amanda to the JCC Early Childhood Development and pray that I would get there without having to pull over many times to calm her down. I really hate it when she cries when she is in pain and we are in the car, because all I want to do is hold her and comfort her. I am just hoping that I finally get to the bottom of her tummy problems. What kind of foods are out there that are gluten-free? I am totally blind here regarding this. I would welcome any suggestions. Thanks.

[skikat]

Sounds like your child has an overgrowth in yeast problem. Without going on with a long summary, let me just say that my son who is now 11 months old had all the same problems as yours. Yeast in the gut can be very painful and cause severe cramping. The arching of the back in pain is a sure sign. Another clue, is greyish sticky stools are a sign of malabsorbtion. The yeast can cause this problem and black specs in the stool are signs of yeast "die-off". If your child recently had a probiotic due to abx, the yeast "dies off" and can cause an increase in fussiness for the two days of die off and the bi-product of the yeast (yeast poop) is black specs. Yeast "die-off" is a good thing and after it is taken care of, your child should be okay. Although, some children need to take a probiotic daily because the bad yeast continues to overgrow on a regular basis due to a possible immune dysfunction. You can find out much more about all of this at a web-site enzymestuff.com , but also specifically about greyish poops and black spec poops at enzymestuff.com/rtstools.htm. Your child may need to take a probiotic daily, like a vitamin. My son gets the probiotic powder in his formula. My son also has a gluten-sensitivity and he is now on neocate formula. It is a hypo-allergenic formula, no soy, no milk, etc. It has been a miracle! They also have a "formula" for after 1-year that is packed with vitamins and minerals called neocate+1. It is expensive, but we get ours off ebay, much cheaper. You might also investigate the book "The Yeast connection". VERY interesting. Let me know if you have any other questions. Good luck.

ALS