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Does This Sound Familiar


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#1 sugarsue

 
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Posted 19 July 2010 - 05:24 PM

Does this behavior sound familiar to anyone? My 8 yr old dd is diagnosed gluten intolerant but she also is diagnosed with PANDAS (neurological reactions to strep infection). The PANDAS causes OCD and other intense behavior problems. She is undergoing some treatment for that and that, along with the gluten free diet have been what we have been doing to try to help her.

This can happen any time during the day but it is much worse at night. She will become worried that I am mad at her. Anything can trigger it. Then she will whine, plead, beg, cry "are you mad? don't be mad? you're mad right? Mommy, Mommy, Mommy, please, don't be mad" etc... and she won't stop. Nothing I do can get her to stop.

I am a mess from this. I can't even begin to explain how horrible it is to experience. I can't breathe, I need to get away, but she follows me everywhere with this. The more I try to get away, the worse she gets. She just won't stop. If I react, that's proof to her that I really am mad. If I don't react, she does not believe me that I'm really not mad.

I have been assuming all of her behavior issues are related to the PANDAS but recently I am wondering if this one is hidden gluten. I have allowed her to eat oats and other items that could have cross contamination, have not always checked her sauces at restaurants, etc. since she never had the gut reaction and is not diagnosed celiac. But recently she has had an obvious reaction to gluten that has made me wonder.

Of course I plan on tightening up her diet right away and see if it helps. I just thought I would come and post to see if this sounds like anything that anyone else experiences. I truly do not know how to handle this. My inability to help her, reason with her or just plain force her to stop is pushing me to the limit and I feel like I am going to lose my mind.

Susan
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

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#2 skigirlchar

 
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Posted 19 July 2010 - 05:52 PM

many post on here increased anxiety as a side effect to glutening.

for myself: the tighter i am w my gluten-free diet, the less i've experienced neuro issues such as vestibular migrains. when i do "cheat" i sometimes notice an increase of anxiety related behaviors such as increases in my need to make things work correctly (whether it's my finances, the laundry, or when moving getting things packed) and not "be a burden" on others. when i don't cheat i have no need to dwell on how my daily life may interact with others. i just do my thing.
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-severe soy, wheat & yeast allergies 2006
-penicillin allergy 2008
-multiple other food & environmental allergies starting 1982
-non-iron deficient anemia - life long
-migraines 3/07
-negative celiac blood testing 10/09 & upper endoscopy biopsy 3/10
-negative GERD observation during upper endoscopy 3/10
-positive hereditary hiatial hernia during upper endoscopy 3/10
+continually working on gluten-free/CF/SF related to allergies & celiac like symptoms
+continually working on elimination of caffine, chocolate, & spicy foods related to hernia & heartburn

#3 lynnmb

 
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Posted 19 July 2010 - 06:01 PM

This behavior is similar to what we have experienced over the years with our daughter who was recently diagnosed with Celiacs. She would have terrible outbursts that would start for no apparent reason and then they could last for up to an hour. She would follow me, yelling, chanting, crying etc if I tried to get away. She was inconsolable, would not respond to calm talking, yelling, comforting etc. I recently wondered if perhaps she was bipolar. It was exhausting for both of us. It occurred most often at night and in the mornings, before school, leading to many absences. I honestly feel that she felt so awful and tired from the undiagnosed problem that she was beside herself. This was a very typical behavior for her at age 7-10. We had some improvement as she got older, but the most dramatic improvement has been since we have gone gluten free. I wish you success with the gluten free diet, I know that it has resulted in marked improvement for our dauthter and our family in just one months time. Best wishes!
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#4 2sweetico

 
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Posted 19 July 2010 - 07:08 PM

Dear Susan,
I'm fifteen years old and I was diagnosed a few months ago. My mom and I live alone and we are very close. She has been the best person for me through these tough times. I have many similar problems to your daughters and many symptoms stopped after I changed my diet. One of the most important foods to check are the sauces on food. Many sauces have gluten in them. Soy sauce is in a lot of things and it is not gluten free. Since she is so young, go buy some snacks and gluten free foods to replace rather than eliminate. They make a gluten free soy sauce and almost anything by Annie's is gluten free. Also, most meringues and macaroons are gluten free and even ice cream! You need to be there for her. I used to pass out in the bathroom and my mom would always come running. I would always cry because I didnt want her to worry or not sleep, but it made me feel so much better to know that she didnt mind because inside I was truly scared.

I hope that helps!

Jazmine
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#5 sugarsue

 
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Posted 20 July 2010 - 03:22 PM

Jazmine, thank you for your perspective as the child. That really helps. I want to be there for her and help her. It's just so hard to do when she feels bad and there is nothing I can do. I hope as she gets older it will get easier.
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

#6 sugarsue

 
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Posted 20 July 2010 - 03:24 PM

This behavior is similar to what we have experienced over the years with our daughter who was recently diagnosed with Celiacs. She would have terrible outbursts that would start for no apparent reason and then they could last for up to an hour. She would follow me, yelling, chanting, crying etc if I tried to get away. She was inconsolable, would not respond to calm talking, yelling, comforting etc. I recently wondered if perhaps she was bipolar. It was exhausting for both of us. It occurred most often at night and in the mornings, before school, leading to many absences. I honestly feel that she felt so awful and tired from the undiagnosed problem that she was beside herself. This was a very typical behavior for her at age 7-10. We had some improvement as she got older, but the most dramatic improvement has been since we have gone gluten free. I wish you success with the gluten free diet, I know that it has resulted in marked improvement for our dauthter and our family in just one months time. Best wishes!


Lynn, this does sound very similar to my dd. I also have to worry about whether she is exposed to strep so this makes it so complicated. We have been gluten free for so long but really, probably too much of the little exposure. Thanks for the support.
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

#7 sugarsue

 
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Posted 20 July 2010 - 03:26 PM

Skigirl, I find it very helpful to hear how gluten affects others to try to understand what she is going through. I am allergic to wheat so when I get it I itch. But I don't have the neurological stuff and it's so hard to understand. Do you do anything to help with your anxiety when you get glutened?

Susan
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09




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