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I Am Puzzled, My Girl Is In Troubles And I Don't Know What To Do!


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#1 jepacar

 
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Posted 16 August 2013 - 12:55 PM

She was diagnosed Celiac in March. We went gluten free right away, but not just gluten, also dairy and processed food and she got better, her stools were perfect and her reflux went away, until I don't know how or where (I cook everything, we don't go to restaurants neither, we don't even buy gluten free stuff) we both got diarrhea, but mine was gone in a week, but for her in being over 6 weeks. The doctor sent her to do a lot of tests and all of them were negative. She said my girl looks healthy and no dehydrated at all, and she said I should just wait, but how can I wait when I see her in pain like this?. I have removed almost everything from her diet... She eats strawberries, eggs, spinach, some blueberries, some little carrots, a lot of broth that I cook, 1 little orange a day, a little piece of avocado, chicken, a little bit of beef, a little bit of pork, fish (salmon) breastmilk, a lot of water, she used to eat nuts but I suspended them a couple of days ago since they were all unprocessed in her stools...that is all...I AM PUZZLED!!!


Edited by jepacar, 16 August 2013 - 04:53 PM.

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#2 w8in4dave

 
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Posted 16 August 2013 - 06:14 PM

You said she has alot of broth , make sure it is gluten free,Do you make the broth your self??? Or store bought? Some store bought has Gluten in it.  You said "My Girl" and also said she had breast milk , I assume she is very young. I hope you find out what is causing her problem. If she is not dehydrated she isn't doing to bad. I understand you problem. I hope she gets better soon ... 


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#3 tarnalberry

 
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Posted 16 August 2013 - 06:47 PM

You said breastmilk - are you still eating gluten or dairy? 'Cause she can get the proteins through there.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#4 jepacar

 
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Posted 16 August 2013 - 07:32 PM

You said she has alot of broth , make sure it is gluten free,Do you make the broth your self??? Or store bought? Some store bought has Gluten in it.  You said "My Girl" and also said she had breast milk , I assume she is very young. I hope you find out what is causing her problem. If she is not dehydrated she isn't doing to bad. I understand you problem. I hope she gets better soon ... 

I cook everything, I make the broth out of chicken and bones, everything is organic and grass fed. She is 4 years old


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#5 jepacar

 
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Posted 16 August 2013 - 07:34 PM

You said breastmilk - are you still eating gluten or dairy? 'Cause she can get the proteins through there.

no dear, we have the same diet, I have gluten and dairy problems too, the only difference is that I eat a lot more vegetables and also more meat, but the rest is the same diet for both of us...


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#6 mamaw

 
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Posted 16 August 2013 - 08:23 PM

how  long  has the big D  been  happening?  Could  it  be  a  flu type  thingy? other  things  come to  mind  sometimes  strawberries, eggs, spinach  or  eggs  can  give  way to issues for  some....baby  carrots? are  they   organic? well  even organic  produce  has  had  some  issues lately  but   organic   or not  carrots  (baby)  may  be pre-washed  but  they  need  to be  washed  again  at  home  before  eating...


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#7 w8in4dave

 
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Posted 17 August 2013 - 05:07 AM

I think strawberries with all the seeds can cause the D ... Specially if she is eating alot of them. I am sure she loves them but maby you can cut them down or out of her diet? I know it is hard. Now you know Dairy can have a reaction to Celiacs , just because it is breast milk it is still dairy. I am not sure if your willing to stop for a few months to see if that will help. It may stop her problem right away. There are other products you can give her. 


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#8 jepacar

 
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Posted 17 August 2013 - 06:12 AM

how  long  has the big D  been  happening?  Could  it  be  a  flu type  thingy? other  things  come to  mind  sometimes  strawberries, eggs, spinach  or  eggs  can  give  way to issues for  some....baby  carrots? are  they   organic? well  even organic  produce  has  had  some  issues lately  but   organic   or not  carrots  (baby)  may  be pre-washed  but  they  need  to be  washed  again  at  home  before  eating...

It's been happening for 6 weeks so far and no, it is no the flu type. Some days she is constipated and then diarrhea. Everything we eat is organic, and she eat carrots in egg cup cakes I cook for her, so they are cooked. She use to eat the food that I mention plus a lot of more before (after we went gluten free) and she was more than fine, but after we got the cross contamination or I don't know what, she hasn't been able to recover. It took me far shorter to help her to recover after 4 years of eating gluten than now...


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#9 jepacar

 
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Posted 17 August 2013 - 06:20 AM

I think strawberries with all the seeds can cause the D ... Specially if she is eating alot of them. I am sure she loves them but maby you can cut them down or out of her diet? I know it is hard. Now you know Dairy can have a reaction to Celiacs , just because it is breast milk it is still dairy. I am not sure if your willing to stop for a few months to see if that will help. It may stop her problem right away. There are other products you can give her. 

Breastmilk is probably the reason why she is alive, there was times (before I knew she was Celiac, when she was so sick and the only food she could tolerate was breastmilk, it is nothing like cow's milk or any other milk and cannot possibly be replaced by a product, so that is not an option for us. I've been thinking about the strawberries, I just wonder how come she was completely fine eating al of the foods above plus much more, and now she is not. I'll try to cut down a little bit the amount she eats (she eats just 6 per day) and see what happens.


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#10 mommida

 
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Posted 17 August 2013 - 06:23 AM

I suggest you start trying to figure another intolerance.  Keep a food journal (yourself included for the breastmilk) and get her back in to a pediatric gastroenterologist.  These are basic symptoms for a number of health issues and she will probably be scheduled for an endoscopy with biopsy.  I would go everything that is being "ruled out" or diagnosed in the doctor's opinion.  (making sure the doctor is ordering the eosinophil count from the samples)

 

Some things can be tested for at the regular ped's office.  (You can start with a collection kit for stool to rule out parasites.)


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#11 jepacar

 
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Posted 17 August 2013 - 07:48 AM

I suggest you start trying to figure another intolerance.  Keep a food journal (yourself included for the breastmilk) and get her back in to a pediatric gastroenterologist.  These are basic symptoms for a number of health issues and she will probably be scheduled for an endoscopy with biopsy.  I would go everything that is being "ruled out" or diagnosed in the doctor's opinion.  (making sure the doctor is ordering the eosinophil count from the samples)

 

Some things can be tested for at the regular ped's office.  (You can start with a collection kit for stool to rule out parasites.)

She got all of the stool's test done and they were negative and she has appointment with a gastroenterologist in December!! for the moment I'll do what you suggest (journal) and see how it goes. I'll go back to the pediatrician and mention about the eosinophil count. Thanks!


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#12 weluvgators

 
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Posted 17 August 2013 - 04:07 PM

Have they looked for intestinal blockage? My understanding is that if a blockage develops that diarrhea may be the only way that things can keep moving around the blockage. I assume that an x-ray and/or ultrasound would help with that type of analysis, but I don't have experience or references for the issue. I hope you can figure it out soon. I agree that the breast milk is probably essential for her right now.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#13 jepacar

 
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Posted 17 August 2013 - 04:21 PM

Have they looked for intestinal blockage? My understanding is that if a blockage develops that diarrhea may be the only way that things can keep moving around the blockage. I assume that an x-ray and/or ultrasound would help with that type of analysis, but I don't have experience or references for the issue. I hope you can figure it out soon. I agree that the breast milk is probably essential for her right now.

no dear, they haven't looked at any blockage, just the stools tests, so I'll mention this as soon as I can get an appointment with the pediatrician to see if he can send her for an x-ray or ultrasound, I hope they don't send her to do anything invasive ;(  I'm so afraid of all of this, and yes, I'll keep breastfeeding because it also comforts her a lot...thanks!!


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#14 AlwaysLearning

 
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Posted 17 August 2013 - 08:11 PM

Someone here had the idea of combining keeping a food diary with foods changing every four days to try to narrow in on possible culprits. I love that. Much better than eliminating everything and ending up eating too much of the same thing.

The four day cycle could help you get more variety back into her diet and split up some of the things she is currently eating into different day groupings to help eliminate them as culprits.

Just throwing out ideas to consider: It sounds as if she's had full-on celiac for all of her life. Has she been tested for vitamin deficiencies? They have some pretty crazy symptoms. And has she taken any medication or supplements lately that could have thrown her intestinal bacteria or system out of balance? Bacterial overgrowth does come with diarrhea as a symptom, but that should have been one of the first things they tested for, along with parasites.

 


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#15 jepacar

 
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Posted 18 August 2013 - 06:50 AM

Someone here had the idea of combining keeping a food diary with foods changing every four days to try to narrow in on possible culprits. I love that. Much better than eliminating everything and ending up eating too much of the same thing.

The four day cycle could help you get more variety back into her diet and split up some of the things she is currently eating into different day groupings to help eliminate them as culprits.

Just throwing out ideas to consider: It sounds as if she's had full-on celiac for all of her life. Has she been tested for vitamin deficiencies? They have some pretty crazy symptoms. And has she taken any medication or supplements lately that could have thrown her intestinal bacteria or system out of balance? Bacterial overgrowth does come with diarrhea as a symptom, but that should have been one of the first things they tested for, along with parasites.

 

Yes dear, I could feel she was uncomfortable even when she was in my belly, then she was born with severe reflux, but nobody could tell what was going on (neither could I) so doctors kept telling me she was just a "fussy girl" so sad. Fortunately I never believed that, because there was days when she was happy, but I couldn't figure it out why was that. I never stop my researching until the Celiac possibility came and I when to the doctor to ask for the Celiac test and there it was, clear as water. After that I started eliminating food and we finally started doing great on a paleo diet. Her stools were beautiful and the reflux was finally gone. This lasted for a couple of months until "I don't know how" we got sick (I have gluten intolerance too) but she hasn't been able to recover...in the middle of this diarrhea I started giving her half capsule of gluten/dairy/soy free probiotic and yesterday I started wit 250mg of L-Glutamine, other than that se is not getting anything. I'm alone in this because I have specialist app in December...When she was tested Celiac the doctor told me we were doing great, because despite the celiac, everything was fine, he said just iron was a little bit low, but still fine. The last tests were about "microbiology, culture and sensitivity parasitology" that is all what I know. Because everything was fine, the doctor told me just to wait and see...but it's been more than 6 weeks!! now she looks still happy, no reflux in back, she complain of stomach ache before having diarrhea...but I don't want to wait until she is completely sick... :( I'm so sad...


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