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How Long Til Antigen Levels Are Down?

alexiskb

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alexiskb Newbie
alexiskb
Posted

My 3 year old was diagnosed with Celiac this past June (after a month of diarrhea and vomiting). Diagnosis was confirmed with an endoscopy and biopsy.

We have had an and off issues with her GI and have recently decided to switch to a new doctor. Old doc sent recent lab results with a nasty note (in keeping with his MO) indicating that since her antigen levels were not 0, Celiac may be a misdiagnosis OR she is getting gluten in her diet.

Our whole house is gluten free and her school is VIGILENT so I'm pretty confident that she is gluten free.

So my question is, how long did it take for your kid's antigen numbers to come down? In June her numbers were HIGH, almost 300. 3 months on the diet and her numbers were around 130. Does this seem on target?

New doc will see us in a few weeks and I'm sure will answer questions (and probably order another blood test, sigh), but in the meantime, any thoughts out there?

Thanks so much!

Alexis

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A&Z'S MOM Apprentice
A&Z'S MOM
Posted

i am lookin at my daughters results as i am typing....the doc u mentioned is plain nuts...it takes a while for the numbers to fall...case in point..my daughter, had 200 plus in her first result dated march 2008...and it came down to 35.8 dated jan 2009.....after a whole year..and we r vigilant too...the school is invovlved...we maintain a gluten free home...we all eat the same stuff....my doc was quite pleased and saw the numbers fall....and said that just the falling indidcates the diet is working...threee months is too short a time....but come on from 300 to 130...its reason enough to celebrate..... :D

sometimes i think the should teach empathy in medicene school too....it seems the docs r clueless about the emoitional fall out from a diagnosis like celiac...just hang in there.....your daughter is going to be fine...and the fact she is so young..means she will be better equipped to handle everything including nutty docs!!!! u r in the right place though...the folks at this forum r very supportive and great ideas....tc

alexiskb Newbie
alexiskb
Posted
  • Author

Thank you SO much for the reassurance - that's what my gut was telling me (and that's why we are switching docs), but it really helps to hear what you have to say.

The support here is a big help as we navigate this big change!

Alexis

i am lookin at my daughters results as i am typing....the doc u mentioned is plain nuts...it takes a while for the numbers to fall...case in point..my daughter, had 200 plus in her first result dated march 2008...and it came down to 35.8 dated jan 2009.....after a whole year..and we r vigilant too...the school is invovlved...we maintain a gluten free home...we all eat the same stuff....my doc was quite pleased and saw the numbers fall....and said that just the falling indidcates the diet is working...threee months is too short a time....but come on from 300 to 130...its reason enough to celebrate..... :D

sometimes i think the should teach empathy in medicene school too....it seems the docs r clueless about the emoitional fall out from a diagnosis like celiac...just hang in there.....your daughter is going to be fine...and the fact she is so young..means she will be better equipped to handle everything including nutty docs!!!! u r in the right place though...the folks at this forum r very supportive and great ideas....tc

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