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Doctor In Albuquerque, Nm For Genetic Test Order?


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4 replies to this topic

#1 ABQscientist

 
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Posted 21 April 2008 - 08:01 AM

Greetings All,

I found this message board with a Google search looking for a doctor in Albuquerque to help me with my what I believe could very well be the Celiac auto-immune disorder with genetic marker.

After living a life of intermittent misery that I was recently describing to my two acupuncturists as "Essential Dysphoria," with a lifetime of "depression" that led to being on disability now, I noticed a very consistent pattern of malaise caused by ingesting ANY wheat product. It's only been since Friday (3 days) of no wheat and I woke up today not feeling suicidal.

Can anyone suggest a doctor here who orders the genetic test for celiac disease? I understand very well why blood and skin antibody tests are highly unreliable, especially after a person hyas stopped ingesting what is poison for them. Even with just 3 days of no wheat, I share the views expressed by several here that they will refuse to ingest a poison simply to allow their doctor to do a cheaper test, which would be meaningless anyway, because I don't want to ingest a poison so they can do multiple cheaper and unreliable tests instead of the single and more-expensive definitive genetic test(s).

My health insurance will let me see any doctor who accepts Medicare for reimbursement. It's a Medicare Advantage plan wher I pay extra for the freedom to go out of network.

I'm hoping to find someone here who knows of a doctor who orders the genetic test for the celiac disease mutation.

The reason is that I've been miserable for so long, that i'm unwilling to continue on my own ad-hoc "negative challenge" testing which requires me to ingest POSSIBLE poisons like barley to see if i'm "allergic" to not just the corn I've known about my entire adult lie, but maybe now also all gluten-containing products, which will require a major change in my diet, shopping, and eating habits.

Does anyone know of a doctor who I can see here who is likely to "cut to the chase" and order the expensive genetic test?

David
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#2 Ursa Major

 
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Posted 21 April 2008 - 09:44 AM

David, usually they only test for the genes that are officially recognized in the US as celiac disease genes. But in reality, there are more genes than that that predispose to celiac disease, as scientists have acknowledged that they haven't figured it all out yet.

Plus, there are quite a few people who have full-blown celiac disease without having those official genes! Meaning that even if you have those genetic tests done and don't have those two genes, that doesn't mean you don't have celiac disease.

You have apparently figured out that gluten is the culprit in making you ill and causing your misery. Meaning that at the very least you are gluten intolerant, no matter what your genes are.

So, either don't eat gluten and be well, or eat it and have the blood tests and biopsies done. Just knowing what your genes are won't tell you if you should eat gluten grains or not.

In reality, trying the gluten-free diet is the best and most reliable test of them all.

You may try Enterolab testing, they will test you for active gluten intolerances as well as genes.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#3 Mom23boys

 
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Posted 21 April 2008 - 01:49 PM

Another vote for Enterolab
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Shellfish free since 1980
Milk free (all forms) since 1991
Feingold in 2003
First gluten-free round 2007
Now entering full time Gluten free, egg free, almond/peanut free

#4 ABQscientist

 
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Posted 11 July 2008 - 11:56 AM

Thank You for your reply. When I first came here I knew nothing about celiac but have always known that I am intolerant of corn. In my other posts I gave a full history but the bottom line is that my "illness" goes way beyond gluten sensitivity.

What matters is that over the past year since a diabetes diagnosis and greatly reducing wheat intake for caloric restriction I've become sensitized to notice that wheat caues me extreme GI problems, but much more importantly for my survival, it greatly worsens my disabling "double depression" and other psychiatric problems that often make me feel suicidal.

The reason I'm posting here is that I sorely need someone who can help me find a healthy diet so my life does not have to end with suicide. Someone else strongly suggested a naturopath and my posts mention that I have two acupuncturists, but the one I trust the most is a former engineer who feels the same way I do about "muscle testing" as a diagnostic tool. We both feel it;s no different from asking a Ouija Board for answers to the unknown. My other acupuncturist trid the muscle testing on my by putting little pieces of different foods and dietray supplements on my belly and doing what seemed like a cross between "playing chicken" and arm wrestling in telling me to hold my arm at my side and after a gap of time sh;ed either pull my arm away from my tordso or it would stay at my torso. It seemed to me that she could have very easily (consciously or not) been waiting for me to relax my arm muscle and then pull it away from me. Even then, she got so many puzzling responses from me that she even admitted to me that she was getting different responses for the same item. And she was greatly perturbed that my arm would pull away for practically every one of the vitamin pills I had brought with me.

My life would be so easy if my only problem was gluten intolerance!

But it isn't. And my psychiatric response to MANY different foods is so severe that the thought of a negative challenge to confirm a new sensitivity is making it impossible for me to try new foods.

I can't do this on my own using the standard elimination/rotation/journal method because I'm afraid of trying new foods because they often make me violently ill .. plus, sometimes, the negative response is inconsistent.

My PCP told me that he sawa a study saying that non-reproducible food sensitivities are thought to sometimes be caused by bacterial or mycoplasma overgrowth of small bowel. But he offered no diagnostic test and he told me that he did not know of any GI doctor in the entire state here who would diagnose such a thing, much less treat it.

So yes, now I know that the genetic test won't be the answer because if I can't eat tomatoes (sometimes) but have never had any problems with potatos, what can I do?

I need (PROFESSIONAL) help with this and pretty much all of the naturopaths here (plenty, with a massage school on almost every block) "believe" in nonscientific diagnostic methods like the sill arm-pulling exercise that even the practitioner doing it told me that my results were not reproducible.

PLEASE. Does anyone know of a GI DOCTOR here who can help me with MULTIPLE food intolerances that leve me feeling suicidal????

D.

So, either don't eat gluten and be well, or eat it and have the blood tests and biopsies done. Just knowing what your genes are won't tell you if you should eat gluten grains or not.

In reality, trying the gluten-free diet is the best and most reliable test of them all.

You may try Enterolab testing, they will test you for active gluten intolerances as well as genes.


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#5 MaryJones2

 
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Posted 11 July 2008 - 12:06 PM

Hi ABQ,

You can try to contact the Albuquerque support group. They may be able to refer you to doctor in Albuquerque that can help you.

Albuquerque - Support Group
Contact: Marilyn Johnson
Albuquerque Gluten Intolerance Support Group
Celiac Sprue Association New Mexico State Coordinator
Tel: (505) 299-5283
E-mail: marilynyj@comcast.net
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