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Update On My Daughter


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#1 AMom2010

 
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Posted 03 December 2011 - 10:48 PM

An update - I am not sure what to think anymore.

A little background: My DD began having D at the age of 13 months 4 to 5 times per day that continued for nearly 2 months. Her height is in the 95th percentile, and her weight is in the 60th percentile, so good there but she has an enormous appetite. Her celiac bw came back normal, which is not uncommon from what I understand for such young children. 6 weeks after the onset of her problems, I decided to go gluten free for myself (my bw was also neg but symtpoms have improved), hence the whole family now eats gluten free meals. DD has still been having gluten filled cookies and crackers and such for snacks, but her D really improved although she was still having D 4 times per week, but only having BMs once or twice a day. She also began drinking lactaid milk at about the same time as our family began having gluten free meals. So who knows what helped!?!

At the age of 17 months, she began vomitting. Over a three week time period, she vomitted 4 times. Her P Dr. put her on Zantac for reflux. Last week I followed up with her GI Dr. about the Zantac and she ordered an xray of her intestines to determine if she had a buildup of stool, which in fact she does. Now I have been instructed to do a 2 day Miralax cleanout. The GI also told me to continue the Zantac for 2 more months, then to reduce the dosage for a month before stopping it all together.

I told the GI that I no longer care about testing and am going to start a strict gluten-free diet for my daughter. She agreed, although she doesn't really think gluten is the answer, but told me I should reintroduce gluten after 6 months for a challenge, then to repeat testing. UGH!!

Anyway, to sum it up - could a child who presented with chronic D began having reflux and build-up of stool on a gluten-lite diet? I really believe she will get better on a gluten free diet, at this point I feel bad for keeping her on it as long as I have while I have suspected gluten is the issue for the past 6 months. Niether her ped. or the GI believe gluten could be causing the issue, I guess they just want to humor me, but who cares! Any advice or insight would be welcomed. Thanks!
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#2 beebs

 
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Posted 03 December 2011 - 11:09 PM

Is there a particular reason you suspect gluten? Not to say it isn't that, but it could be other things as well. I think getting a diag before going gluten free is far easier in the long run - some people can't tolerate gluten challenges so remain undiagnosed forever. She came back negative on the bloods but did she have a endo yet??
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#3 mushroom

 
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Posted 03 December 2011 - 11:16 PM

I think the gray area here is the gluten lite - is there really any such thing when someone is intolerant of gluten? It does muddy the waters.
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#4 AMom2010

 
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Posted 03 December 2011 - 11:41 PM

I guess I really won't know until she is completely gluten free...

As long as her symtoms improve I don't really think I care too much about the diagnosis at this point. I don't think it would be too hard for me to get one of her Drs. to label her gluten intolerant for school purposes if the gluten challenge doesn't work out. What are others experiences with that?
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#5 beebs

 
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Posted 04 December 2011 - 12:03 AM

yeah - as long as you don't mind about Diag then that sounds like a plan. My GP is really good because she is gluten intolerant herself, but I do notice that the Paed GI is really testing the kids full on and not sure what the outcome will be, but I doubt he'll give mine a gluten intolerance diag until they do the challenge anyway. Good luck with it. I agree with mushroom - if she has a problem with gluten then gluten lite won't make any difference. :)
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#6 AVR1962

 
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Posted 04 December 2011 - 12:30 AM

Sounds like you were seeing improvement on the gluten-free diet. I would suggest trying to be stricter with the diet but the other thing I would suspect is the lactaid milk. You might try taking her off both for a couple weeks and then introduce the milk while off gluten and see if she reacts to milk. Meantime I would not sub the lactaid milk with a lactose free, reason being there's additives in the lactose free milk that can give as much issues as the lactose itself.....xanthan gum or carrageenan.
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#7 Roda

 
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Posted 04 December 2011 - 07:03 AM

My oldest son does not have a celiac diagnosis. Bloodwork all negative multiple times and he had a negative scope. We could find no other cause for his stalled growth, daily stomach aches and constipation since birth. I put him gluten free after his scope. It's been a little over three months now. We are now really starting to see the changes. He no longer is constipated and is regular, no more stomach aches/gas pain and bloating and he has gained 7 lbs. I figure the height is next since when he gains weight he grows up too. The weight is significant to me since this is more than he usually gains in a whole year! I don't think it is coincidence either.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#8 M0Mto3

 
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Posted 05 December 2011 - 07:21 PM

Your daughter sound very similar to mine. She was born at the 50th% for height and weight. By 10 months old she was 50th% for height and down to the 5th for weight. She is not diagnosed. Her ped intially did not do all the bloodwork. Then, she referred to GI. When she saw him it had already been 3 months of gluten free. He wanted her back on gluten. She did horrible, but after a 2 month gluten challenge she still had negative bloodwork. So, he has her diagnosed as intolerant to wheat (grrr...). Ped was pissed about her weight at the end of the gluten trial and said she didn't care what the testing said that she just needed to get off gluten. She did not want me to push for a scope. She just wanted my little one to have a chance to thrive.
So, here we are 2 months back on a gluten free diet. She is doing well. I have not put her back on milk, yet. I do feed her dairy products, but I gave her milk one day and she had a gross bm that day. So, she drinks Almond Milk, which she loves. I get her the vanilla almond milk (which is sold in all grocery stores that I go to) because it has more calories than the regular.
So, I know that my daughter (who is now 17 months) will never go through another gluten challenge. I am hoping that in the next few years there maybe other ways to diagnos Celiac's. In the meantimeI am debating taking her to the Celiac Center at Children's Hospital of Philadelphia to see someone who is more knowledgable than her current GI doc. But, for now, I know that her being healthy is what is most important.
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#9 AMom2010

 
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Posted 08 December 2011 - 03:01 PM

Is there a particular reason you suspect gluten? Not to say it isn't that, but it could be other things as well. I think getting a diag before going gluten free is far easier in the long run - some people can't tolerate gluten challenges so remain undiagnosed forever. She came back negative on the bloods but did she have a endo yet??



I suspect gluten because she tested negative for parasites and h. pylori. Her reducing substances tests were also negative, which is the test for fructose intolerance. Her tests for lactose intolerance were also all negative. Not to mention the positive rsponse I have had on the diet.
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#10 AMom2010

 
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Posted 08 December 2011 - 03:03 PM

Your daughter sound very similar to mine. She was born at the 50th% for height and weight. By 10 months old she was 50th% for height and down to the 5th for weight. She is not diagnosed. Her ped intially did not do all the bloodwork. Then, she referred to GI. When she saw him it had already been 3 months of gluten free. He wanted her back on gluten. She did horrible, but after a 2 month gluten challenge she still had negative bloodwork. So, he has her diagnosed as intolerant to wheat (grrr...). Ped was pissed about her weight at the end of the gluten trial and said she didn't care what the testing said that she just needed to get off gluten. She did not want me to push for a scope. She just wanted my little one to have a chance to thrive.
So, here we are 2 months back on a gluten free diet. She is doing well. I have not put her back on milk, yet. I do feed her dairy products, but I gave her milk one day and she had a gross bm that day. So, she drinks Almond Milk, which she loves. I get her the vanilla almond milk (which is sold in all grocery stores that I go to) because it has more calories than the regular.
So, I know that my daughter (who is now 17 months) will never go through another gluten challenge. I am hoping that in the next few years there maybe other ways to diagnos Celiac's. In the meantimeI am debating taking her to the Celiac Center at Children's Hospital of Philadelphia to see someone who is more knowledgable than her current GI doc. But, for now, I know that her being healthy is what is most important.



It sound as though your ped is on the ball, I am glad you were able to get the wheat intolerance diagnosis for school, that is really what worries me. AS long as the little ones feel better, that is all that matters IMO.
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#11 AMom2010

 
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Posted 08 December 2011 - 03:13 PM

Well, its been 5 days of gluten free, but 3 of those days were on mega doses of laxitives to clear out her system. I am really kind of annoyed b/c I never really believed she was impacted. The nurse told me to expect hard stool, followed by sticky stool, followed by watery diar. a day later when we started. Well DD went straight to watery diar 4 hours after her first dose. I feel like she looked impacted on the xray b/c she had not yet had a bowel movement that day. I have been telling the GI since June what ENORMOUS BMs she has when she goes, it fills up the enire diaper twice daily... She has a huge appetite. I got the results of her follow-up xray today, her colon looked clear. DUH!

The nurse also told me to continue giving her a quater to a half a dose of miralax daily until her next appt (in 6 months) for maintanince. WTH!! Sorry, but I am so frustrated!!!! She has never been constipated, never gone longer than 12 hours without a huge BM or loose blowout!!!!!!!!!!!!!!!!!!

Am I a bad mom if I ignore this and just continue with gluten free and see how it goes??
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#12 amberskids

 
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Posted 08 December 2011 - 03:40 PM

If she has a casein intolerance though the lactose test will be useless - many people can't tolerate cows milk especially when it's not raw... after all even a calf has 4 stomachs with which to digest mothers milk. Maybe try dairy free first and then do a completely gluten free diet after that - dairy free for at least 6 wks to start. I hope she feels better soon!!!
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#13 amberskids

 
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Posted 08 December 2011 - 03:42 PM

Well, its been 5 days of gluten free, but 3 of those days were on mega doses of laxitives to clear out her system. I am really kind of annoyed b/c I never really believed she was impacted. The nurse told me to expect hard stool, followed by sticky stool, followed by watery diar. a day later when we started. Well DD went straight to watery diar 4 hours after her first dose. I feel like she looked impacted on the xray b/c she had not yet had a bowel movement that day. I have been telling the GI since June what ENORMOUS BMs she has when she goes, it fills up the enire diaper twice daily... She has a huge appetite. I got the results of her follow-up xray today, her colon looked clear. DUH!

The nurse also told me to continue giving her a quater to a half a dose of miralax daily until her next appt (in 6 months) for maintanince. WTH!! Sorry, but I am so frustrated!!!! She has never been constipated, never gone longer than 12 hours without a huge BM or loose blowout!!!!!!!!!!!!!!!!!!

Am I a bad mom if I ignore this and just continue with gluten free and see how it goes??

Yikes!!! That can build dependence! I wouldn't do it either =/
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#14 AMom2010

 
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Posted 08 December 2011 - 03:58 PM

Thanks for the reply amberskids. Part of the reason for my frustration is that the advice from her doctor seems like a "stock" answer for a kid with constipation and does not take into account my child's history (of frequent large and loose BMs). I am so discouraged and feel like I am on my own.
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#15 Hailiesmom08

 
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Posted 08 December 2011 - 05:29 PM

Amom2010- I am so sorry you and your daughter are going through this... I can truely relate as we are going through this exact same thing at the moment. We saw a GI last Friday after my daughters test results cane back negative due to an IGA deficiency. We felt the GI specialist was following common by the book protocol without even listening to a word we had to say. Sounds like your GI did the exact same thing. Though our daughter had pooped 1 day prior to the appt I knew it was a possibility she was constipated due to giving her gluten per her doc for blood testing. He tried telling us all her issues could be due to constipation alone...I knew better. He advised us to give her miralax 4 times daily for 5 days then to back the dosage down for another 3 days. This didn't sound right to me either so I only gave her 2 servings one day and that did the trick.
I would say it's safe to say to never go against your mother instinct. You are not a bad person at all for listening to it rather than a GI doc.
I feel your pain and again am so sorry you ate going through this.
I'm here to chat if you need someone to talk to.
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