Hello! My son is turning 2 in april. Ever since he was a baby he has had severe mucousy stools. At about 15 months dr finally agreed to do restriction diet and we found improvement with eliminating milk and soy. His stools did not go solid, but had SOME consistency. After complaining again to his dr she sent us to a gi because he has not gained any weight in 9 months. He has develoental and speech delays also. The gi agreed something is amiss besides toddlers diarrhea and tested for celiac, fats and sugars in stool and did a blood work up. His serum iga was in range at 53 and his ttg and tga were 3 with a range of 0-19. All his stool tests came back negative so it appears he is absorbing fats and sugars and his only deficiency is a tiny low on iron. His bun and creatinine are low which shows low muscle which we knew lol. I have not fully discussed what to do next with gi but I really thought he would be positive for celiacs with his symptoms! Has anyone had a similar experience and done biopsy anyways? I am going to do more allergy testing but I fear it will be a waste since he never has skin reactions, only gi issues. I am getting so discouraged. My lil guy is miserable...
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#2
shadowicewolf
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Posted 17 March 2013 - 08:49 PM
It is very possible that he has NCGI (non-celiac gluten intolerance), which has no test outside of the elimination of gluten from diet.
I have also heard that young children are quite difficult to test for it.
Allergies don't always turn up on the skin. My tomato allergy for example causes me to have a harsh sunburn like feeling on my head, face, neck and shoulders. I did the skin prick test and it was one of the largest hives the allergist had ever seen. Safe to say, he agreed i was allergic.
I've also heard that they can occur in different forms as well.
You could also do the genetic test, as celiac is genetic. It may not get a diagnosis, but it will give you some sort of idea of whether or not he has the potential to develop it or not.
ADHD
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
Asperger's syndrome
Stress issues
Celiac
Allergic to red food coloring.
#3
GottaSki
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Posted 17 March 2013 - 09:06 PM
Welcome!
With his symptoms I would insist on a full celiac antibody panel:
tTG IgA and IgG
EMA IgA
DGP IgA and IgG
You have already had Total Serum IgA -- what was the range for the test you quoted?
Also...more nutrient testing besides iron:
B1, B2, B6, B12, D, K, Ferritin, Zinc, Copper
Once all the blood is drawn -- I strongly suggest removing ALL gluten for at least three months...many children test sero-negative for Celiac Disease. My own grands had all negative...yet removing gluten improved or removed all their symptoms.
Hang in there and ask any questions 
-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.
Celiac.com - Celiac Disease Board Moderator
#4
stephanie86
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Posted 18 March 2013 - 08:34 AM
Thank you! The iga was pretty in the middle... not sure exact numbers. The past few days for some reason has been horrible. His stools are back to pure mucus, and he will barely eat which is weird for him! All he wants is milk... well rice milk. I am calling allergist today...
#5
GottaSki
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"Migratory flight complete."
Posted 18 March 2013 - 08:59 AM
Oh goodness....I hope he is feeling better very soon.
-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.
Celiac.com - Celiac Disease Board Moderator
#6
nvsmom
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Posted 19 March 2013 - 01:34 PM
My boys all tested negative for celiac disease but because I am a celiac, and I suspected issues in a couple of them, I made them gluten-free as well. I was right to do so. Two of my kids health had obvious improvements. We didn't do the biopsy since it would not have changed the fact that they were going gluten-free.
I agree with Lisa (she gives great advice) and try the gluten-free diet when his testing is done. Hopefully he'll feel well soon.
Nicole 
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
CANADIAN
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