Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Annoyed With New Doctor

corinne

By corinne
in Doctors

Recommended Posts

corinne Apprentice
corinne
Posted

I just moved to California from Montana so I had to find a new doctor (too bad - my doctor in Montana was fantastic). I asked my new doctor for a thyroid test. I get this once a year because of multinodular goitre. When I went into the lab this morning, I found out that he had ordered a whole stack of other tests. That's great, but it would have been nice to be told. One of the tests is the celiac panel. There's absolutely no point to this test. First, I have been gluten free for a year. Second, I don't have celiac disease. I have tested negative on the celiac panel several times before when I was eating gluten. I have collagenous colitis which can also be treated with a gluten free diet. I have been in complete remission with the colitis now that I am gluten free. So now I get to pay (part anyways) for a test that I don't need.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Corrine,

I"m sorry that you have a doctor like this---how frustrating! There seem to be so many of them!

Personally, I would recommend finding a new doctor. It is a pain, but worth it in the long run.

Amazing that he ordered the Celiac panel....most docs don't get it. I have one who told me I didn't have a problem with gluten.

Go figure.

Good luck and I hope you find someone else!

Laura

  • 1 month later...
tiredofdoctors Enthusiast
tiredofdoctors
Posted

Given that I have had so much trouble with doctors MISSING things, I'm kind of thinking "better safe than sorry". I had to press for months and months to have a genetic test done when my paternal grandfather DEFINITELY had the syndrome. Come to find out? I have BOTH genes. If I found a doctor who was a little more pro-active and a little more "over" than "under", I may stick with him/her for a while, just to see . . . . .

hathor Contributor
hathor
Posted

If it were me, I would have refused the tests I knew nothing about or felt were unnecessary.

I know it is easier to look at things in retrospect. But for the future, people should realize that it is up to them what tests or treatments they have, not their doctors. (A couple years ago, a doctor insisted I needed surgery on my knee. I said I wasn't convinced. He got angry, but thing is, I didn't have to convince HIM. He had to convince ME and he hadn't. They couldn't do the surgery without my permission, even though it was scheduled. [i ended up with a knee completely healed by physical therapy, at which point the doctor said he was glad "we" had decided against the surgery :blink:])

Similarly, if you want a test and your doctor is reluctant, tell him or her that you will just go ask for a second opinion from another doctor because you think the test is necessary. No guarantee that this will work, but I've found it effective.

  • 2 years later...
choiceshealthfood Newbie
choiceshealthfood
Posted

Corinne,

My brother lives in Montana, just outside Missoula, and we are trying to locate a good Gastroenterologist for his step-daughter (who we suspect has gluten sensitivities, possibly Celiac).

Any chance you lived in Missoula? Or perhaps could provide your Ex-Doc's info so we could contact him and ask for recommendations?

Thank you for your help.

Sincerely,

Brynn Hildebrand

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,843
    • Most Online (within 30 mins)
      7,748
    Lisa Harrison
    Newest Member
    Lisa Harrison
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Vaccines

      By trents · Posted

      Welcome to the forum, @Dawn Meyers! Are you currently on immunosuppressant medications for your various autoimmune disorders?
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      Hi I have celiac disease and the dermatitis herpetiformis rash Also other autommune diseases.  I have had bad side effects to all the vaccines I have had and now my Doctor wants me to have the pneumonia vaccine.  I am concerned because of some of the bad side effects I have had in the past example Hep B after shot couldn't  move arm for several months.  Flu shot and COVID was sick right after shot. Told not to get anymore. My lung is inflamed and have a cough I can't seem to get rid of. Very concerned 😟. 
    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
×
×
  • Create New...