Thoughts On My Son's Most Recent Labs?
Posted 13 November 2012 - 01:34 PM
I started reading about celiac and also realized I have it, which blood tests confirm across the board (deciding on the endoscopy still). I saw a celiac specialist who confirmed it and have my boys scheduled to see a pediatric celiac specialist at the end of the month. His GI swears he doesn't have it based on biopsies (more than six of duodendum). But she also doesn't really offer any other idea of the problem (I think she actually thinks I'm making up the diarrhea to a degree).
After some nagging she did run another celiac panel for me (the first she ran through quest was negative, but not the full panel).
Here are his results from Prometheus:
Notes: "Results may support a diagnosis of celiac", "Serological markers for celiac disease detected" (I'm no expert but I think I can interperet this part...)
DGP lgG .5 EU/mL: negative: referenc range <4.9EU/mL
DGP lgA 15.0 EU/mL: positive: reference range <6.1 EU/mL
TTG lgA .4 U/mL: negative; reference range <10.3 U/mL
EMA lgA: negative: Reference range "negative"
Total lgA: 294 mg/dl (3-13 years 41-395 mg)
Genetics: DQ2/other low risk gene, relative risk low
I think it looks like a duck, quacks like a duck...No matter what I'm doing gluten free indefinitly with him. I would like to have a clearer diagnosis for people who will ask about it (meaning people who might be feeding my son and think I'm crazy) but I believe this kid has celiac.
Also, we saw the GI two weeks ago today, went gluten free about 12 days ago, following endoscopy. According to her nurse he's grown 3/4" in that time. Guess it was the Halloween candy?
Posted 13 November 2012 - 02:19 PM
I was only weakly positive at 43 with total villous atrophy - my teen sons had different symptoms for years, but both tested negative upon my diagnosis. They were older so each removed gluten at different times and each has had symptom resolution - had they decided to wait until they tested clearly celiac - they would have likely ended up as sick as myself and my eldest daughter.
The tests are far from perfect.
Keep up the great work and watch him grow
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 -- probable 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.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
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