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

Doctors


Guest kmmolina

Recommended Posts

Guest kmmolina

I'm so discouraged. I live in Central California (Fresno). I have a great doctor who knows nothing about Celiac but it willing to work with me. When I first saw him a year ago I brought him information regarding blood work, symptoms, etc. I went throug all the "stuff" and was diagnosed. He is great...no complaints. However, I decided I would like to see a doctor on a consult basis who really understands this disease and someone I can ask questions of...like "why is my poop light yellow", etc. After a little research and talking with my doctor, Dr. Lozano, he agreed to refer me for consultation with the Standford Celiac Clinic where they will take my insurance (Blue Shield HMO).

I just got a response from them denying the request. They said I could see a Gastro guy at the county hospital. When I saw the Gastro guy for my endo...after I disclosed to him that my sister had died from Celiac....his comment was "Nobody dies from Celiac. Then to top of my day (this was yesterday) I talked with someone from United Airlines regarding gluten free meals, which they advertise on their website. I was told that it wasn't available to me because I was using frequent flyer miles and I wasn't traveling first class. These kinds of comments make me shut down...I'm so tried of of explaining!!

OK...thank you for listen...enough venting. Does anyone have any experience is dealing with HMO insurance that isn't welling to let you see a doctor that is a Celiac Specialist?

Thanks in advance...Kathleen

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



LKelly8 Rookie

It's an HMO - everything gets turned down the first time. Persevere and see if Doc Lozano will write a letter to the insur agent, explaining why a "special specialist" is needed in the case of celiac disease. If he's already written one, ask him to write another. Ask your regular GI to write one as well. I bet this celiac clinic has to deal with insur nonsense all the time - call the office at a non-busy time and speak to the payments/insurance person, ask them if they know of anything you can do to speed up the process.

:) Good luck and keep at them, don't give up! :angry:

If worse comes to worse, you could contact your local newspaper or news channel for assistance.

As for the idiot who doesn't think celiac is deadly . . .Open Original Shared Link . . .and this is from 2001.

plantime Contributor
When I saw the Gastro guy for my endo...after I disclosed to him that my sister had died from Celiac....his comment was "Nobody dies from Celiac.

After I learned that I have celiac disease, I researched it a lot. I learned that my mom died of untreated celiac disease (she refused to give up her bread). I told my sister (a nurse) this, and she didn't believe me. Since learning that her daughter is allergic to wheat, she started researching celiac disease for herself. A couple of days ago on the phone, she told me that she realized I was right, mom died from untreated celiac disease.

I know you want the help of a doctor that already knows about celiac disease, but why bother? Once you are diagnosed, the treatment is up to you. You say your regular doc is willing to help you, let him. It will be good for him, you, and all of his patients for him to have to learn about celiac disease.

Rusla Enthusiast

What an absolute dumb-arse. This is where I say we should all see veterinarians. I would wish him to get Celiac disease and then I hope he gets cancer of the colon so that he will finally realize that is one of the ways to die from Celiac disease. It was like one doctor I had who said there was no such thing as hypoglycemia and when he was pushed into doing the test he learned there was such a thing. It would be nice if we could have their licenses revoked because they are morons.

mouse Enthusiast

I think she wants someone who KNOWS the disease and any illnesses that sometimes come with it. I love my GP, but he does not have enough time to research this disease as he also has to keep up with all the other changes in medicine. I am certainly not his only patient. So, if I have a problem, I lightly research it, we discuss it and deicde what should be researched further or what tests he wants to order. Sometimes he sends me to another doctor. But, he makes sure it is one who listens to a patient about Celiac. So, I understand why she would want one that she could go to if something crops up. After all her Mom probably died from undiagnosed Celiac.

Rusla Enthusiast

I also research, I am a born researcher. When I figured I had hypothyroidism I researched that and things it was related to, I literally spent 3 full days in the medical library and photo copied the pages so that I would have things to back me up. I would strongly suggest doing the same and sending copies to your insurance companies, be sure to highlight the dying from parts.

Guest kmmolina

Thanks for your responses. It is great to have a place to go and put your stuff out there, and caring knowing people will answer. Mouse, you are right...I just want to physically talk with a person who comes from a place of knowledge and understanding about Celiac and what all goes with it. Heck, I'l just like to talk to another person ...in person that knows what Celiac is. I wish my sister was still around...we could have had lots of conversation about feeling tired, stomach aches, and poop. Thanks for you support...kmm


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



Celiac.com Sponsor (A8-M):



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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748

    PatientOne
    Newest Member
    PatientOne
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.