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Doctor In Mesa, Az


mouse

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mouse Enthusiast

I need a doctor in Mesa, Chandler or Scottsdale, Arizona, that KNOWS about celiac disease. I live in Gold Canyon, AZ. I have already been diagnosed 21 months ago by blood test. But, I am having some issues and need to know if this is what I should be expieriencing (sp) at this time. The doctor who diagnosed me tells me he does not have the time to learn about all the ramifications. He told me to learn everything (when he diagnosed me) and I have done the best I can. But, when I saw him last week with my concerns, I was told to accept this disease (which I have) and to buck up (in lesser words then he used). I was told this was an allergy and no obit says that anyone died of Celiac. It was semi-implied that I was a hypocondriac, because I was having a hard time accepting the exhaustion and the depression I am expieriencing because of it. Plus the migraines and headaches are certainly not any fun. I never even went into the major vision problems I am concerned about. I am a heavy reader and don't know what I would do without my books. I see the eye doctor this coming Wednesday for my yearly exam. It was bad enough to be treated as a hypocondriac as I lost 50 pounds and got to the point of not even being able to keep Petia-lite (sp) in my body for more then a few seconds. He said, when he finally realized that I had this disease that in another 2 weeks I would not have had a recovery. He also said to become an expert on celiac disease. I am not, but have done the best I could. Now the doctor seems to be angry with me when I have questions. I REALLY need a doctor who REALLY KNOWS about the whole celiac disease thing, not just the diagnosis. Thanks for any help anyone can give me. Maybe there is a central place I can phone for a recommendation for my area. Armetta


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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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