i am losing my mind! DD1 has a problem and the doctors cant figure it out.

[LionessMom]

they keep dismissing my concerns but i keep persisting. i know something is wrong with my daughter. it fit all the signs of celiac but that test came back neg. so they sent us to the ped clinic at the university. after seeing a gastro, an allergist, and an internist all they did was check for dairy and soy allergy. the did the skin test. neg. so they drew blood. i wont get those results back for a week.

i dont know what they will test for next. i am not even sure what to tell them i think it is either. i know these things:

1. cow milk and soy milk make her belly bloat up but a little hard cheese only makes her appetite lessen.

2. she has dark circles under her eyes for the last year.

3. as an infant she always had mucousy poop and threw up her entire stomach contents at least 3 times a day.

4. her poop now is stinky, sometimes floats, and sometimes diarrhea.

5. she has no fat on her. her head had no fat on it until i stopped dairy for her. now she has fat on her temples.

6. she hasnt gained weight in months. at 3.5 (4 in april) she weighs 30 lbs and has weighed that for awhile now.

7. she can be aggressive. hyper at times. argumentative and downright cranky. she melts down at the drop of a hat. very emotional.

 8. chronic bad breath. no matter what we use to brush her teeth or how often we do it.

any ideas?

[LionessMom]

she keeps asking to nurse like tha baby. so i started pumping milk for her. she has been weaned for almost 2 years. most of this started after i weaned her. so i am off dairy and am pumping for her.

[deditus]

Did you try going gluten free? My dd (and I) are gluten intolerant but do not have celiac disease.

[LionessMom]

i want to do gluten free but was told not to until they are done doing tests bc it will mess it up?

something i read makes me think we all have yeast overgrowth issues as well...

[painefaria]

We never came up positive...  The allergist that we were seeing just said if you cut it out and it works then keep doing it.  The tests are notoriously imperfect.  You listed 8 reasons to give it a try.  What tests are you waiting for?

[APToddlerMama]

That almost sounds word for word like what was going on with DS.  He came back with two nut allergies and a soy allergy, but no wheat or dairy.  We read the book Feast Without Yeast (can buy it on Amazon) and followed Stage 1-3 which cut dairy and gluten, and several other things.  It was the best thing we ever did.  Nearly all of his trouble started when I quit nursing him at 19 months as well.  I would highly suggest looking at diet no matter what your doctor says.  DS's doctors have treated me like some psycho and I cannot believe that most of them don't buy into the diet thing when it was so clearly helpful to him.  Best of luck.

[LionessMom]

i am receiving incedible resistance to diet changes around here. both from DH and DS. DH will bring home milk bread and cheese even after i ask him not too. then i have to listen to DD1 beg for it bc she loves it so much. :(  it seems like he wont help until i have a test that says it has to be done. there are a couple of things it could be that can be tested for. if those come back neg i will talk to the gastro about writing "orders" to remove it from her diet. this opposition makes me sad. DS said he can handle it cause it is for his sister but DH is stubborn. he def wont like it before all the christmas dinners we gotta go to. you should have heard the ruckus when i said no to the mac-n-cheese at thanksgiving. sigh.

i have cut out as much dairy, wheat, sugar, and soy as i can. but some are still hidden in foods and sometimes i give in bc i am tired of fighting.

AP- what do you eat? What is left?

[bama]

My DS2 has something called disacharride deficiency and has a lot of those symptoms. His problems didn't start until he weaned which is common. We went through allergists and GI doctors, blood tests etc, until a stomach biopsy was done and came back positive.

http://www.csidinfo.com/symptoms.htm

Symptoms Summary of Symptoms Other symptoms this child and or other children in the research literature present with are: chronic watery and or acidic diarrhea colitis like symptoms  upper respiratory infection highly susceptible to viral infections failure to thrive weight loss vomiting (in more severe cases-may be related to gene configuration) abdominal distension irritable bowel syndrome  abdominal pain bloating gassiness colic or irritability excoriated buttocks severe diaper rash or appearance of slight burn from stomach acid foul smelling fermented semi solid bowel movements dehydration malnutrition slowed growth  slight yellowing of the skin (due to rising carotene levels in the blood) inflammation of pyloric sphincter muscle between stomach and superior duodenum Possible association with renal calculi (oxalate) Possible copper malabsorption

[utahmama]

^^^ Those symptoms sound like my 2 year old.  Once diagnosed, what do you do?  Do you have to eliminate foods, take medication or how do you deal with this?

[APToddlerMama]

Originally Posted by LionessMom 

AP- what do you eat? What is left?

PMed you!