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Doctor In Albuquerque, Nm For Genetic Test Order?


ABQscientist

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ABQscientist Newbie

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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Ursa Major Collaborator

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 Open Original Shared Link testing, they will test you for active gluten intolerances as well as genes.

Mom23boys Contributor

Another vote for Enterolab

  • 2 months later...
ABQscientist Newbie

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 Open Original Shared Link testing, they will test you for active gluten intolerances as well as genes.

MaryJones2 Enthusiast

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: Open Original Shared Link

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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