Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Doctor In Albuquerque, Nm For Genetic Test Order?


ABQscientist

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    2. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    4. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748

    SarahZ
    Newest Member
    SarahZ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.