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

[jepacar]

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!!!

[w8in4dave]

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 ... 

[tarnalberry]

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

[jepacar]

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

[jepacar]

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...

[mamaw]

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...

[w8in4dave]

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. 

[jepacar]

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...

[jepacar]

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.

[mommida]

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.)

[jepacar]

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!

[weluvgators]

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.

[jepacar]

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!!

[AlwaysLearning]

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.

 

[jepacar]

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...

[mommida]

she was scoped for the Celiac diagnoses?  This can still be a congenital defect of the GI track.

 

A little more about Eosinophilic Esophagitus.  Food or airborn "trigger" activate eosinophil production, this can cause damage for 12 days.  (That is why a 4 day rotation won't help you out much is this is the situation.)  You need the reaction happening to get diagnosed, and this can be a seasonal airborn allergen.  Eosinophils, the white blood cells usually reserved for fighting parasite infection, damage normal healthy tissue.  A biopsy must be done because some of the eosinophils are embedded in "normal" looking tissue.  (The doctor also must order the pathologist to test the eosinophil count.)  The damage looks like creamy spots., furrowing, Schatzi rings.  Does your child have occassional spotted throat with bad breath?  Little ones don't complain about the throat hurting ~ they just say the stomach hurts.  Get back to the doctor before any seasonal part of the puzzle is missing.  This is not easy to get diagnosed and is now proven to be connected to Celiac.

[w8in4dave]

Maby you can try  some pro biotics? It may help with D. I have been taking them but I am not sure about a 4yo you can ask your doc. if everything eles shows up clear. It may help ... I hope you find the answers. I hate to hear children being so sick and every thng is "Normal" Evidently everything is not normal they just hav't found the problem yet. Hang in there!! 

[jepacar]

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.

And it WAS a blockage!! the doctor did an x-ray and there it was, a big piece of stools. Yesterday I took her to the hospital and they gave her PEG 3350 to take 3 tablespoons a day for 3 days, then move to 1 tablespoon for a month, I wonder if that is the best option, they said if it doesn't work I have to go back. I'm happy to know what it is and also concern thinking how could that happened, I know my girl and she doesn't hold poop and she has a very healthy diet. I thank you very much weluvgators for your advice because I went to my doctor office telling her about what you said so she could run more tests and she finally did; before she keep telling to wait and see   I send you a big hug!!!

[w8in4dave]

Wow!! I am so very happy they found the problem!! Good for you!! Finally answers! Good luck to you and your little one!!

[jepacar]

Wow!! I am so very happy they found the problem!! Good for you!! Finally answers! Good luck to you and your little one!!

Thanks dear, but now we are stuck with this impacted stool. We cannot make it move!! I took her to the hospital where they prescribed PEG 3350 which caused her severe pain and diarrhea (every 10 minutes), but the hard stool is still there so I suspended after 3 days (the doctor agreed) The doctor said it'll break by itself and I wonder how this is going to happen if it hasn't happen in almost 3 moths!! my poor little thing...

[nvsmom]

Thanks dear, but now we are stuck with this impacted stool. We cannot make it move!! I took her to the hospital where they prescribed PEG 3350 which caused her severe pain and diarrhea (every 10 minutes), but the hard stool is still there so I suspended after 3 days (the doctor agreed) The doctor said it'll break by itself and I wonder how this is going to happen if it hasn't happen in almost 3 moths!! my poor little thing...

When I was a kid, I had issues like that. my mom had to "help" me out... i think she used an old anal thermometre. perhaps that would help?

[weluvgators]

I hope your daughter has had some improvement. I am interested in which technology they used to see the blockage. Have you looked at Epsom salt baths? Those may help some. Best wishes for getting the blockage moving and out.

[1desperateladysaved]

I hope you have her back to her regular diet or will soon.  I am glad you found the blockage in time.  The doctors should find out if the intestine has telescoped on itself.  That happened to my nephew. Intussusception is the name of that problem.  I wonder if there may be a gluten link? 

 

Please keep us updated as I see this thread began in August and early September is here.

 

 

 

[w8in4dave]

Yes we really are interested in how she is doing. Please up date us if possible. 

[jepacar]

Yes we really are interested in how she is doing. Please up date us if possible. 

Thanks friends for your support. This is the thing, they found out about the blockage through an x-ray, then they gave her a bulk amount of laxative (PEG 3350) for three days. The day number three she was so sick that she had to lay down the whole day on top of towels because she was passing some kind of yellow water constantly, so I took her to emergency were a "doctor" told me to stop the medication and that the stool would brake down by itself, which it never happened. The last Friday I finally got an appointment to see her pediatrician who told me  "this is not a simple stool blockage" but he doesn't know what it is, so he sent her to do a lot more test (blood and stools) meanwhile she still has diarrhea and pain.... I don't think I have more hair to pull out of my head