Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

carolinse

Hi New To Forum And Have Questions

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites
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!!!!!

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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...

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,777
    • Most Online
      4,125

    Newest Member
    Sdceliac
    Joined
  • Forum Statistics

    • Total Topics
      112,052
    • Total Posts
      956,601
  • Who's Online (See full list)

    There are no registered users currently online

  • Forum Discussions

    I am celiac and eat gluten-free, DF, SF and sunflower free because I'm highly reactive to all 4. I discovered about a year and a half ago that I would have severe and immediate GI reactions, similar to as if I ate dairy, to anything with sunflower/safflower products in it, but I think that's when using the oil became more prevalent too. Strange because I loved sunflower seeds as a kid. I've also linked it to places I've eaten out where everything was fine and then discovered they started using s
    So i recently had a baby and 3 months postpartum I started celery juicing and after juicing my stomach would be in so much pain. So I stopped it for a while and a whole month no pain or issues. I made an apt with a GI doctor to just get my blood work checked everything came back great except the Ema it was 1:20 he said it was strange because all the other Celiac panel test were negative my Ttg and the genetic screening even. So I made an apt with another doctor for second opinion she stated that
Potatoes are good for breakfast! Your concoction sounds pretty good. K, how about this? Peel & dice potatoes, fry them in just enough olive oil to keep them from sticking in a skillet until they begin getting crispy. Toss in diced sweet peppers or maybe chili peppers, onions to soften. I know you're not doing egg yolks b/c of iodine but you can do the whites. Pour egg white on top until the white is done. If you have a steak or some leftover steak, you can heat that on the side. YUM!
  • Blog Entries

  • ×
    ×
    • Create New...