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Back From The Doc


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7 replies to this topic

#1 wsieving

 
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Posted 19 September 2008 - 08:17 PM

Well, I think I went in expecting too much. I really wanted this doc to wow my socks off, but he really didn't. Granted, I went in with probably close to as much knowledge on the subject as he had, and I listed all of DD's issues leaving nothing out right away, so I guess it didn't leave him with much to say. The thing I am most disappointed about though is the fact that he suggested no back up plan, didn't have much to say other than she was obviously "scrawny" and under the 3rd percentile. I asked him about the full panel of 5 tests and he said that two of them were very inaccurate and so they did not need to worry about those (the anti gliadin tests). So he drew blood, and now we wait for the results. I left there with nothing more than I arrived with other than knowing she was tested. This is so frustrating. Oh, and he diagnosed her with acid reflux and gave us a prescription that my insurance doesn't cover that costs over 300 dollars per month. MIL said seek a second opinion if we do not get anywhere with him, and I think I may have to do that.

I really thought he would order a RAST test. He didn't even mention it. Her cheeks have always been rashy, and I've never read anywhere that it was a Celiac symptom, so have always wondered if there is something else she is eating that is causing that. Anyway, I will update with test results once we have them. Thanks for listening.
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#2 mftnchn

 
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Posted 19 September 2008 - 08:29 PM

How disappointing but not an uncommon experience unfortunately. Antigliadin is only inaccurate for diagnosing celiac, it still will indicate sensitivity to gluten.

Rashes definitely are a sign of celiac, there is a skin version of the disease. If she has any weeping from the rash, get her to a dermatologist who can biopsy the weeping lesion. If positive, it is a positive diagnosis for celiac with nothing further needed.

I would be VERY cautious about using the acid reflux medicine. If she is celiac she may LACK stomach acid not have too much.

I would be very unhappy with this doc and look elsewhere.
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4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

#3 ravenwoodglass

 
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Posted 20 September 2008 - 03:19 AM

I agree with the previous poster but if you do take her to a derm do make sure that they biopsy beside the lesion not the lesion itself. That is where the antibodies will form. If she can tolerate it use Pepto Bismal for the stomach pain. It will not interfere with acid production. Reflux is common with folks with celiac.
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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)

#4 wsieving

 
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Posted 20 September 2008 - 05:49 AM

I really don't think her cheeks have ever wept. They are just very rosy and extremely bumpy like eczema. Some days they are really really red, other days they are just pink, but always very bumpy.
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#5 feedmykids

 
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Posted 20 September 2008 - 07:17 AM

Eczema can also be caused by a food allergy. I would find a doc. who would get her tested. Our pediatric GI told us that Antigliadin IGA is more common with Celiac. Antigliadin IGG is more common with an allergy to gliadin ,a sub protein of gluten, or chrohn disease, cystic fibrosis, etc... SO while a positive Antigliadin test may not be conclusive for celiac , it does mean something is going on. Hope you find out soon!
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#6 suzyks

 
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Posted 20 September 2008 - 06:14 PM

I will be taking my daughter to KC next month as well, I can't say that I have high hopes though. Her Pediatric Dr has dx her with having celiac but wants her to see Pediatric GI. I really don't have a lot of faith in specialists but I trust our PCP so we will go.
Hope you find out more.
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#7 wsieving

 
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Posted 21 September 2008 - 06:13 AM

suzyks, which gi is she scheduled to see? I highly recommend NOT seeing Robert Kane. He had a horrid bed side manner, and I felt like he was completely clueless. He barely said anything while we were in there, and also told us to limit her fluid intake after giving us a fact sheet on Chronic Nonspecific Diarrhea and telling us that she doesn't meet any of the symptoms of it b/c she isn't thriving but wanted to treat her for it anyway. I'm a little bugged by this guy :angry: .

There is a doc up there that specializes in celiac and malabsorbtion, I would ask for him.
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#8 suzyks

 
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Posted 21 September 2008 - 08:01 AM

There was a Dr that I was told, by the lady making the appointment, had a problem relating to younger children. It made me wonder why he was working at Children's Mercy? Anyway, she will be seeing Dr. Cocjin who she said is great, since I don't know I am taking their word for it.
I just have a feeling they will take one look at her and say, There is nothing wrong with this child! She LOOKS very healthy, except for the dark circles under her eyes and strange rash on her head. She FEELS awful most of the time though. I can always fall back on her primary Dr though, I hope.
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