My 3.5-year-old son was diagnosed with celiac disease just over a year ago. His TTG has gone from well over 100 to normal during that time, and all symptoms are gone.
However, in all routine bloodwork done since Oct 2012 his liver enzymes have remained elevated. His GI ordered some additional bloodwork last week to look into it. All the typical liver tests came back normal, including his AST. His CK level came back very high though - just over 2,300. The next step is to see a neurologist. The GI said the CK has to do with muscles and red blood cells. The GI called us at 7 pm on a Friday to tell us this and we're terrified of what it could mean.
For what it's worth, he is an incredibly athletic, energetic kid. No signs of lethargy or weakness since going gluten-free.
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#2
GottaSki
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"Migratory flight complete."
Posted 25 January 2013 - 07:23 PM
Hi Semily-
Were his liver enzymes elevated at diagnosis? or is this new as of Oct '12?
First thing is try not to worry - I know - impossible for a parent, but try. Doctor has done the correct thing in transferring to another specialty -- was it neurologist or nephrologist?
Only advice I have at this point is ask lots of questions -- also make sure all "abnormal" blood tests are repeated.
Celiac can play havoc with multiple symptoms. Hold on to the fact that he has improved gluten free and will likely continue to do so.
Hang in there Mom.
Big HUG
Were his liver enzymes elevated at diagnosis? or is this new as of Oct '12?
First thing is try not to worry - I know - impossible for a parent, but try. Doctor has done the correct thing in transferring to another specialty -- was it neurologist or nephrologist?
Only advice I have at this point is ask lots of questions -- also make sure all "abnormal" blood tests are repeated.
Celiac can play havoc with multiple symptoms. Hold on to the fact that he has improved gluten free and will likely continue to do so.
Hang in there Mom.
Big HUG
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
6/1/13 - Slowly trialing a few of the items above - haven't gotten any back, but some reactions have been less severe
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
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