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gypsyrosenfmommy

Member Since 11 Feb 2013
Offline Last Active Jul 03 2014 07:16 AM
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Posts I've Made

In Topic: While Tests Say No I Think Ds Has Celiac.

03 July 2014 - 04:47 AM

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In Topic: While Tests Say No I Think Ds Has Celiac.

03 July 2014 - 04:37 AM

Oh, poor little cutie. :(  That bloating can hurt. I remember standing on my head or hanging off the edge of my bed (head down) trying to get relief.... I agree that he is the poster child for celiac belly.

 

If you have to wait a ridiculously long time to see the doctor, you could always go gluten-free  now.  Please know that it will make testing harder in the future though as he will have to resume eating gluten for 8-12 weeks prior to testing, but if it is going to take months and months to get in, it could be something to consider.

 

My kids tested negative in the usual celiac test too (tTG IgA) but I suspected celiac disease in 2 of them so made them gluten-free anyways.  They had bigger bellies before too (not as bad as your little guy), as well as some other issues, and it basically all cleared up when they went gluten-free.  They have no diagnosis but they feel better, and that's the main thing for us.

 

BTW, my 6 year old now has such a flat belly that we can see the beginnings of a six pack.   ;)  Best wishes.

 

 

He's adorable! The bath thing is a good idea.......being in water reduces the pressure inside and helps to pass any gas. But he needs to see a Celiac specialist and even if they say no, no after testing, try the diet anyway. Testing in young children can be unreliable and that is a known fact. I bet he improves on the gluten-free diet and his belly will go back to normal size. I know........I looked like that too! The bloat queen......

Good luck!

 

 

That belly is the typical celiac belly if I've ever seen one … and I saw many thanks to Dr. Google (not an educated opinion here, just an opinion).  My daughter also has an enlarged belly, but nowhere near that of your son's.  If she looked like that, I'd camp out in front of the GI specialist's office - I'd pull a Karate Kid and sit there until they let me in.  I really hope you get answers ASAP.  I'm also starting to get a little rough with my dear doctors as we need answers and solutions - not just pat on the back and 'everything will be fine' sort of attitude.  Good luck!!! Keeping my fingers crossed for you and please UPDATE US when you know more.

 

 

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(

 

 

Don't wait for an appointment.  Call the office and explain what you want and would like a referral to the GI.  They may just provide a referral based on a phone call.  Can't hurt to try.

 

 

You must have a doctor now?  I would get one, if my child had such a serious chronic illness.  Does a neurologist follow NF?  Its been a while and I don't remember.

 

 

 

 

 

So a bit of an update for everyone. I took DS off gluten since I posted this. His belly has gone down DRAMATICLY and his skin is clearing  up some. He still bloats like this down from time to time and he still has a SMALL constantly bloated belly but NOTHING like before. I know lactose intolerence and Celiac can be an issue so I am going to try and keep him on almond products and coconut products.  I will try and get a picture up soon of how his belly is improving. Still not great but better. 


In Topic: While Tests Say No I Think Ds Has Celiac.

25 June 2014 - 05:42 PM

 

That belly is the typical celiac belly if I've ever seen one … and I saw many thanks to Dr. Google (not an educated opinion here, just an opinion).  My daughter also has an enlarged belly, but nowhere near that of your son's.  If she looked like that, I'd camp out in front of the GI specialist's office - I'd pull a Karate Kid and sit there until they let me in.  I really hope you get answers ASAP.  I'm also starting to get a little rough with my dear doctors as we need answers and solutions - not just pat on the back and 'everything will be fine' sort of attitude.  Good luck!!! Keeping my fingers crossed for you and please UPDATE US when you know more.

 

 

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(

:) He is my handsome little man. He is hard headed just like me and looks just like his father. I agree he looks like a poster child for the illness. His belly gets even worse than that. There are times at night he just cries and cries though not so much anymore. When he does I give him a warm bath and then lay in bed with him rubbing his belly. I found it helps get the gas out. This is a better picture of him. It took me a YEAR to get him diagnosed with NF AFTER I had already been diagnosed. The doctors where i just moved from NEVER told me even why my oldest started having seizures out of the blue! I am hoping now that I am close to a REALY good hospital I can start getting answers. 

 

 

Clean him (His name is Arlo)

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and messy Arlo LOL (he had just eaten dinner at his grandmothers)

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Don't wait for an appointment.  Call the office and explain what you want and would like a referral to the GI.  They may just provide a referral based on a phone call.  Can't hurt to try.

They wont referell until they see him :( I have been fighting for a long time to figure out why he bloats so bad. 

If that beautiful, poor little boy doesn't have Celiac, I'll eat my computer screen!  He looks like the poster child for it...WTF don't the doctors see? OMG...start getting tough and nasty with these docs so he can get tested and put on a gluten-free diet....PRONTO!   :(


In Topic: While Tests Say No I Think Ds Has Celiac.

25 June 2014 - 09:44 AM

We just moved. The soonest they can get a new patient in is 2 months -_- . Yes a nero follows NF. He has already had his yearly exame 3 months ago. 

You must have a doctor now?  I would get one, if my child had such a serious chronic illness.  Does a neurologist follow NF?  Its been a while and I don't remember.


In Topic: While Tests Say No I Think Ds Has Celiac.

25 June 2014 - 09:36 AM

The problem is getting a referance to a pedi GI. My old pedi refused to do it. (So glad we moved!). Insurance wont pay and the pedi GI if there is no referral. 

Maybe they need to check and see if any tumors are growing in his GI tract or impeding his GI tract?  It looks like that could happen but I don't know much about NF.