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Should We Get A Second Opinion?


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4 replies to this topic

#1 shrty331

 
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Posted 01 May 2012 - 01:11 PM

My six year old son was recently tested for celiacs. His gliadin deamidated IGA was >100. Gliadin deamidated IGG, (tTg) AB IGG, (tTg) AB IGA were negative. He was sent for an endoscopy and biopsy and the doctor said he saw mild scalloping. We were pretty sure we finally had an answer to why he was dropping growth curves, can't concentrate at school and has had constipation since he was a baby. But the gastro told me the other day the biopsy is negative so it's not celiacs and wants to keep him on miralax for the next three months and than meet with a nutritionist to go over what he is eating to see if he is eating enough calories and getting enough fiber... no mention of a possible gluten sensitivity or maybe if it could be celiacs but it was missed on the biopsy... when I tried to ask questions she really didn't answer anything... does anyone think it could still be celiacs? Or is there something else it could be that is causing the high antibodies? Should we take him to someone else???
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#2 ravenwoodglass

 
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Posted 01 May 2012 - 02:59 PM

Yet another doctor who wants us half dead before they will diagnose.:angry: I would get a second opinion only because he would need precautions taken at school. The blood test he had that was a strong positive is the best celiac test we have to date. The scalloping is a sign of celiac and biopsies can miss damaged villi especially in children. After all testing do get him strictly gluten free. Sometimes a ped will give the diagnosis once they see how symptoms resolve on the diet, growth becomes normal and the child gets sick when they accidentaly get gluten. Now that your little one has shown positive on testing do be sure to get the rest of the family tested if you haven't already.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 shrty331

 
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Posted 01 May 2012 - 03:13 PM

We have had the other two tested by the pediatrician. The youngest was fine. My daughter (8 years old) had "positive A" listed for endomysial IGA. And the AB titer was 1:5. The other tests were all normal. She goes to the same gastro as my son on Thursday. I am guessing they will order an endoscopy/biopsy for her as well...
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#4 ravenwoodglass

 
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Posted 01 May 2012 - 03:47 PM

Make sure Mom and Dad get tested also. You might want to give the whole house a gluten free trial after all testing is done. With little ones that is often the easiest way to go. Prevents one waving Oreos in the others faces and dancing. :D
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 shrty331

 
shrty331

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Posted 01 May 2012 - 04:34 PM

The husband and I have both been tested and both came back negative... we went to a gastro and she is sending us both for endoscopies in june. I have been eating low carb, so almost no gluten for over a year, so I wasn't surprised that mine was negative. Been eating as much low carb gluten as I can for the past month and will continue until the biopsy. Pretty sure I have it as I have hashis, hypoglycemia, UARS, fatigue... I will be going back to my low carb diet either way, but am hoping for a definite dx for the kids.
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