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At The End Of My Rope.


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24 replies to this topic

#16 jepacar

 
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Posted 20 July 2013 - 03:34 PM

I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

OMG I hear you dear, I was there too for 4 years!!! until we eliminated gluten, dairy, sugar and all processed food. I'm still breastfeeding because I know how much it helps to heal the gut and now she is happy!!! sometimes I look at her and cannot believe is the same child, all of this tells me she was upset because she didn't feel well, she had a big belly that disappeared with the new diet, but whenever she get cross contamination a lot of those symptoms come back, but since I'm homeschooling her, she is not exposed very much. I send you a big hug!!!


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#17 jepacar

 
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Posted 20 July 2013 - 06:14 PM

I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

I forgot to mention that it took us about 1 month to start seeing real changes. Now we are about 6 months in this diet and she is ssssoooo happy, well, sometimes she get upset, but just for a few minutes. When a person has Celiac or gluten sensitivity the exposure to gluten has damage the gut and it takes a while before it starts healing. I'm glad you found a doctor who thought about it, in our case I had to figure it out, then go to a doctor and suggest the test, reason why it took me 4 years!! Hang on please you beautiful mom and keep going, you have a big supporting group here,


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#18 jepacar

 
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Posted 20 July 2013 - 06:21 PM

Oh, I forgot to add that some kids seem to have issues with breast milk if the parent is eating gluten. You might want to get tested too (it's genetic) and then go gluten-free as well.

Yes!!! big time...I went gluten free for my girl (because I breastfed her) and discovered I had the same issue, so my physical and mental health also improved dramatically after this...


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#19 D-borealis

 
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Posted 20 July 2013 - 08:12 PM

Thanks again everyone so great to hear your personal stories and challenges. Progress has continued to be 2 steps forward, 1 step back, over and over again..  We have bad days here and there and I can't tell if it is because she is still working things out of her system or if I accidently exposed her to gluten somehow. She has unfortunately un-potty trained over the course of the last week. It seems as though her brain is "reprogramming" in some sense of that word :) Overall, she is much happier though. I have also gone gluten free and feel much more alert. I feel a bit overwhelmed about all the possibilities for cross contamination, and the confusion of eating out. Still getting the hang of it.


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#20 LoveMyDucklings

 
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Posted 22 July 2013 - 01:08 PM

We all hijack around here...helps everyone learn...
 
so...from this point forward....ALWAYS ask for written/electronic results for any tests run for anyone in your family (ya...took my way too long to figure this one out).
 
Full Panel:
 
Total Serum IgA
tTG - both IgA and IgG
DGP - both IgA and IgG
EMA - IgA
 
Nutrients.....Celiac prevents proper absorption of nutrients:
 
B1,B2,B6, B12, D,K, Iron,Ferritin, Copper and Zinc
 
If they have not been run:
 
CMP
CBC
 
Hang in there...ask more questions...read..research.


I have the results in hand now. Ped GI appt next Tuesday. The ped acted like gluten intolerance didnt exist and said "gluten is a ht topic right now". :/

TTG IgG 1 ref range (11-26)
TTG IgA <1
Endomysial IgA negative
Gliadin IgA 1 ref range (0-20)
IgA 29
Gliadin IgG 2 ref range (0-20)
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#21 GottaSki

 
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Posted 23 July 2013 - 01:42 PM

I have the results in hand now. Ped GI appt next Tuesday. The ped acted like gluten intolerance didnt exist and said "gluten is a ht topic right now". :/

TTG IgG 1 ref range (11-26)
TTG IgA <1
Endomysial IgA negative
Gliadin IgA 1 ref range (0-20)
IgA 29
Gliadin IgG 2 ref range (0-20)

 

Sorry your ped is being dismissive....sadly this is still far too common.

 

Question -- what is the range for the Total Serum IgA of 29?  If IgA deficient, the tests are inaccurate.  Getting a Total Serum IgG run is not common, but I would suggest it as if the IgA tests are not accurate....that leaves only the IgG based tests...I strongly advise getting two more tests:

 

Total Serum IgG

DGP IgG (Deamiadated Gliadin Peptide) IgG

 

-- which can be tough if your primary is not cooperative.

 

Is your appt today or next Tuesday?  


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#22 LoveMyDucklings

 
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Posted 23 July 2013 - 02:22 PM

There's no ref range on the results paper for the IgA.

Oops, I wasn't clear, the GI appt is next Tuesday, the 30th. I'm hoping for answers, and more testing. She's not even on the growth chart for weight. She lost a pound since her appt a month ago. The ped said he wondered of it was the poop that came out. If it was, that's good it came out, bad that she's still not growing.
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#23 KGCeliacMom

 
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Posted 24 July 2013 - 08:55 PM

I could have written this post myself!  My daughter has the exact same behaviors.  She was diagnosed a month ago at age 3 with Celiacs.  We are a month gluten free and I have seen changes in her behaviors.  Her tantrums are much less and less intense and she seems to be happier, etc. 

 

I  had NO idea she had Celiacs.  My dr. ran the panel because I had so many complaints about her behavior and lack of potty training.  I seriously was convinced she had a mental disorder due to her mood swings and rages! 


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#24 LoveMyDucklings

 
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Posted 25 July 2013 - 12:24 PM

KGCeliacmom, that sounds like us too! I "joke" that my 2 y/o is bipolar because of how moody she is. I realize that some of it is normal 2 year old behavior and frustrations, but this goes beyond that!
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#25 KGCeliacMom

 
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Posted 25 July 2013 - 08:48 PM

KGCeliacmom, that sounds like us too! I "joke" that my 2 y/o is bipolar because of how moody she is. I realize that some of it is normal 2 year old behavior and frustrations, but this goes beyond that!

 

Yes she was out of control.  I am talking severe tantrums daily, she was always upset about something, etc.  A month in I have seen positive improvements, ,but I also have to remember that she is still 3 and full of drama.  I honestly did not know how to parent her at all.  I would have never guessed it was gluten all of this time making her so miserable!


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