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DESPARATE, FRUSTRATED Mom. VA DOCS don't help!!!!!!!

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Celiac Disease
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Posted 2/16/2011 9:55 PM (GMT 0)
Diane,
Ok how much service connected is he for the crohns? Perhaps it might be something to consider to see about getting higher %? What meds is he taking, and what has he taken, and for how long (as it takes me months for most crohns meds to be effective)? He might want to consider different ones, if he feels like it is a crohns issue. I went thru 7 VA Gastroentrologist, before I found one I even remotely liked. I travel four hours round trip to go see him (with lots of pitstops along the way, which usually make the trip more like six hours). Second, I found it helpful to get into counseling given the rage that accompanies pain.
Again my email is open and I am about 2 years older then your son,
Navy

Post Edited (MMMNAVY) : 2/16/2011 7:48:07 PM (GMT-7)

Posted 2/17/2011 6:33 AM (GMT 0)
A simple test will tell you if you have Celiac and then a biopsy. (not that bad). It took me over a  year of eating gluten free to feel 99%.

Sometimes it takes years and years before they decide to test you for Celiac, they always think its IBS (a catch phrase when they don't really know whats  up with your stomach problems)

Posted 2/17/2011 6:59 AM (GMT 0)
MMMNavy,
Here's something interesting. I heard from someone whom I'd been e-mailing that they had heard of a serviceman in the AirForce just like Aaron, my son, who had the same symptoms. After many years of suffering and battling his ilness he was finally diagnosed with "Tropical Sprue" after thinking for so long that he had Celiac which has been called "NONTropical Sprue".

This guy, again like Aaron, was NOT stationed in a tropical area but got the illness anyway. Go figure!
Hmmmmmm...but what are the chances. Still, food for thought. He got better real fast with the new treatment.

I've sent the e-mail to Aaron along with a list of what I think he should be taking as far as Vitamins and supplements. The ball is in HIS court now.
Posted 2/21/2011 5:29 PM (GMT 0)
Hmmm Diane, has he also been tested for some food allergies??? Eggs, dairy??? Just something to think about AND has he tried some magnesium pills and maybe some B vitamins? (malabsorbtions - sorry spelling is off, but you know what I mean LOL) is par for the course with celiacs.
Posted 2/22/2011 1:32 PM (GMT 0)
Diane,

Sorry, I didn't realize Dr. Gleich was a dermatologist...thought he was an allergist.

Well, maybe he can recommend a good allergist?

Take care,
Posted 2/24/2011 7:37 PM (GMT 0)
Thank you everyone for all your input. I've gleaned from your posts and passed the info on to my son. But he's not getting back with me or returning calls.

He did go out to eat with his dad and his dad said he ate more than he'd ever seen him eat in 6 months and STILL he couldn't finish the meal. He's down to 150 lbs and losing and as stubborn as ever. Very frustrating...

His dad lives there in Utah too but he's not very influential/strong in his son's life. They have a "past" where food is concerned. (Skinny kid, verbally abusive Dad) Dad has been on meds successfully for many years so it's not an immediate issue but Dad steps lightly around food issues...

Anyway, I feel like I've done all I can do from 800 miles away. Because he is an adult, I can't twist his arm or demand compliance. Or can I????? Anyone know of a good Voodoo Hex, or Gypsy's spell?? rolleyes
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