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My 11 Year Old Hit With Autoimmune Like Her Mom

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22 replies to this topic

#21 Shelley Ensz

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Posted 03 May 2011 - 08:15 PM

I'm just following up on JudyT's post. Here is the link on our main site regarding Gluten Intolerance, Celiac Disease and Autoimmune Diseases (including scleroderma). As you'll see, it's not the be all and end all, but sometimes gluten sensitivity does play a factor (of some sort) with illnesses and they are still trying to figure out why there is a greatly increased incidence of celiac disease in people who have systemic scleroderma.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#22 Plinksgirl



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Posted 25 May 2011 - 08:43 PM


I am so sorry to hear that. I know that its hard seeing your baby hurt yet, who else will ever understand the pain like you? Fight the fight with her. Take every second and enjoy it to the fullest. And...who's to say that the two of you can't have special days when you both feel bad and make the BEST memories? Memories that no one can ever take from the two of you!!!

Love is way stronger than any stupid illness :wub:


#23 docmartenmom


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Posted 26 May 2011 - 09:22 AM

Hi Responders - Thanks for all of your advice & heartfelt compassion - it means ALOT. I have been giving my daughter the gluten-free diet for a month now, without any change. She is still achy, hobbles in the morning due to sore feet and is still presenting with headaches, occasional temper tantrums :( and low grade fever here and there. In the beginning her pediatrician tested her for ankylosing spondylitis and she was diagnosed with that. Further testing from him and her pediatric rheumatologist came up with the ANA speckled pattern - main doctor says it's lupus, her pediatric rheumatologist doctor says she will not "label" her, so I am frustrated but braced and ready for whatever comes. I am just so sad that this is happening to my 11 year old. I know how terrible I feel on any given day and I am 44 - I had good health up until my mid-thirties, so I cannot imagine how she feels as a kid going through this. I have endless hugs and understanding for her. You all rock so much - I will keep you posted on my little one's progress. Fingers crossed for a remission, and a looong one at that. ~ Lori