Posted By Posting
Oct 20, 2008
maielise
Confused about diagnosis?? Could use some feedback!
Hey super moms!

So last week I posted the results of Julian's Biopsy from Dr. Whitney.

According to the results Julian showed a sensitivity to Gluten. She then had me take him in for a Allergy panel (blood test)

I just got a call from Lisa her Assistant and she tells me that everything came back normal, that he had no allergy to wheat and that it was not Celiac's?

SO I am absolutely at a loss here, I feel like I am back to square 1! I always thought that the biopsy results were pretty diffinitive? GRRR!

So I asked Lisa What DOES that Mean? SO, what is wrong with my son? I don't understand why Dr. Whitney did not call herself like she did with the Biopsy results? Did she think we would not have ???'s Of course Lisa had no clue and was all like, I will have to talk to the Dr. and call you back...GGGRRRR!

OMG, I am so PO'd!

Back to work for me, thanks for letting me vent!

Oct 20, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
grrrrrrrrrrrrrr.... no real answers...... I repeat.. GRRRRRRRRRRRRRRR
Oct 20, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Having been through allergy testing many times the blood tests are not a definitive like the biopsies. A level 3 or 4 allergy or gluten sensitivity would not show on those. I am pretty postitive the celiac test via blood draw is horribly in accurate so I would go by the scope results. I hope you get some answers soon.
Oct 20, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I would agree with the pp. I know that A's blood test didn't show many of her positive skin tests allergies and even the allergies that we have severe anaplatic reactions to didn't show up. I would go with the biopsy results and avoid gluten. JMHO!- Amanda
Oct 20, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Celiac's disease is an intolerance to gluten and the protein in wheat, rye and barley. It could be that she has a mild intolerance to just gluten so I don't think that would classify her in the Celiac's Disease. Try keeping just gluten out of her diet and see if that helps her any. -Sarah
Oct 20, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I would try the celiac diet and see what happens, but that is just me.
Oct 20, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Hmmmmm... Was there damage to the intestinal villi in the biopsy? The biopsy result is what I would go by, NOT blood test, the biopsy is the most accurate. Celiac isnt an "allergy" so it wont show on allergy testing, it is an intolerance in a disease that causes GI damage when exposed to the offending foods. That being said, you can have a wheat allergy/intolerance an not have Celiacs if that makes sense, but she wouldnt have the charicteristic damage of celiac in the intestines if that is the case.. If the biopsy said she has Celiacs, she has Celiacs. Regardless, I would do the celiac elimination diet...
Check with your
doctor first!