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

My celiac doctor fired me- which canceled my enteroscopy - advice ? It’s so upsetting

Samantha Jones
 Share

Recommended Posts

Samantha Jones Rookie
Samantha Jones
Posted

Hi- I’ve seen my celiac doctor since 2017. We had a wonderful relationship. In May 2019- my iron dropped by 50% and my ferritin tripled - inflammation. My celiac antibodies are still trending down. I couldn’t get the doctor to see me. Finally he did. When he did he started ordering a lot of tests. Turned out I had a GI bleed. Anyway - we also did a capsule study. And then onto a enteroscopy with flow cytometry. He sent me a letter stating I asked too many questions and was questing his wording. I didn’t understand. So I am firered from the whole GI department at Johns Hopkins. And my enteroscopy was sceduled in August for 11/4 and they told me today bc I called to confirm something that the test is canceled and I’m fired. Advice ? Obviously I have to find a new doctor. But the enteroscopy is looking for cancer. Ugh. I am so upset. 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I am sorry that this happened to you.  I have had some of my doctors discharge patients when did not comply with their medical advice.  I have not heard that asking too many questions could cause a discharge.  

https://www.verywellhealth.com/can-my-doctor-fire-or-dismiss-me-as-a-patient-2615017

I hope you find another doctor soon.  

Samantha Jones Rookie
Samantha Jones
Posted
  • Author

Yes- it says t in the letter. That I questioned his wording. I didn’t understand some of the words l- so I asked. What is most distressing is the enteroscopy is a very important test and for him to have another GI doctor at Hopkins  cancel the test is wrong. I could Have taken those results and moved on. But now it will take months to start over etc. and to have that test done an even longer time. So I guess you just have to say nothing. 

cyclinglady Grand Master
cyclinglady
Posted

I am so sorry.  Can your PCP doctor help assist you?  

Samantha Jones Rookie
Samantha Jones
Posted
  • Author

I don’t think so. They know each other because they both work for Hopkins. But it’s done. The stress from all this mess and trying to heal. I just don’t believe he would do this. It’s because of the lab values he missed and I had to keep asking to see him. He acted very weird on a conference call saying “is anyone in the room with you ?” So weird. 

  • 1 month later...
Misfit Reindeer Newbie
Misfit Reindeer
Posted

That's a huge red flag, Victoria. Don't blame yourself, just focus on addressing the problem. What are the first steps you need to take? It seems like you should find a new doctor.

I wish you the best of luck.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
(edited)

Suggestion: can you contact your insurance company and find a new list of potential doctors? I wish you luck this sounds very stressful. 

As other mentioned a Dr this adverse to treating you for whatever reason is probably doing you both a favor. It is hard to see that some times when going through it.

Bare with me on the long story:

One of my ob/gyn I swear during my pregnancy began to treat me terribly verbally rude etc. I told people I felt she didn't like me or didn't want to deliver my baby. you can't really change Dr easily after a certain point in pregnancy. I considered it , but was too far along for another practice to take me on. She scheduled a vacation during my delivery date coincidence? Her staff told me the day I set up my last appointment I would be seeing/meeting the other Dr As my Dr would be out of town the week of my delivery. I was surprised and said if I knew earlier I would have liked to have met the other Dr before was it an impromptu trip? No response.

I felt like a hot potato being passed to her partner. As I was contracting before my due date and dilating . My Dr said it's false labor go home the nurse's face showed concerned based on my observation.

It was only after, during the pregnancy with my second child, with a new set of  Dr's many blanks were filled in. These Dr's read my medical reports, monitored me , when I began to contract and  dilate early, they checked the fetus' lungs, planning my NICU delivery, I met our NICU team  before so that he was delivered safely, and care was taken to avoid another uterine inversion! A uterine inversion!!!!????!!!!

My first labor delivery had gone badly compared to my sisters' stories. I found out why only during my second pregnancy and pending delivery. I had a uterine inversion, they didn't tell me, and I also in my pregnancy with my daughter had a horrible rash which the nurse called my irritated Dr about I was told "to stop being such a baby, it was just a PUPPP rash. " I realize how later this is the rash I know to be DH. 

So some lessons I learned :

1. if a Dr doesn't want to treat you any longer once you get past the shock and awe try to realize there maybe a reason ( divine intervention, their uncomfortable/unknowledgeable, scared etc)

2. Sometimes life sends the right Dr when you least realize it and the wrong Dr was busy

3. Nurses are golden, be kind to them, on more than one occasion over the years a nurse advocated for me (carefully , respectfully, as they are talented clinicians themselves to a Dr if I didn't have the knowledge of my !medical file or the ability myself)

My daughters delivery went bad and it was another missed misdiagnosis of my gluten intolerance/celiac, however she was alive, so was I, and I retained my uterus to have my son likely because my Dr's partner delivered me that day not my Dr.

Interesting end point:

years after I had my son, I googled my daughter's ob and found she had since been sued for malpractice. I again thanked God for our good fortune, hugged my daughter, and thanked the universe her partner delivered me that day. My celiac was still at this time undiagnosed.

Good luck finding a new Dr he or she maybe the one you don't think you want, but you need.

Best wishes

 

 

Edited by Awol cast iron stomach
Added and fixed errors
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Whitepaw Enthusiast
Whitepaw
Posted

Sounds like abandonment, which is not legal or ethical. Since it was in writing, I assume their lawyer was involved to minimize risk of lawsuits.  Maybe call and ask why they wouldn't at least let you have this test, and a referral elsewhere, given the risk of untreated cancer and the wait to get in to see someone to start over.  Or have an attorney draft a letter to ask them this. 

NNowak Collaborator
NNowak
Posted

I’m terribly sorry this happened to you. Unfortunately, I feel most of us can relate. In my opinion, the larger a healthcare system grows, the less healthcare is given. These docs and nurses are expected to see a certain number of patients daily, thus time is limited with patients and charting is done while in the room during that limited time frame. Actual patient care is hard to find. So those of us in crises are shooed along through the system. I have my own story, too.  I’ve been in crisis for 3 years with symptoms going back to my last pregnancy in 2006. Finding a different primary care and gastro has been extremely helpful and the docs are finally running tests. It takes a long time regardless of the circumstances, but you have to make sure you have the right professionals on your team and that you understand what is happening. Asking questions is not a reason to be discharged. I feel the doc had other issues at hand and was trying to reduce liabilities. Perhaps going outside of Johns Hopkins will find you a provider that can take the time you need for an accurate diagnosis. Count your blessings. 

kanucme2019 Apprentice
kanucme2019
Posted

So sorry this happened to you but it may be a blessing in disguise.  Sounds like he has some ego complex and wouldn't have been a very good doctor anyway.  And canceling the test sounds a little suspicious too. Probably he had something to do with it. I wouldn't want to have any test done there if that happened to me and I would have fired him if he treated me that way.  I have always ask my doctors a lot of questions especially if I don't understand something or I need to know the risk or alternatives.  Never have they been rude or say I ask too many questions.  This is your life not theirs and you have the right to know and understand what is going on and why this tests are being done.  If a doctor doesn't want to discuss anything for any reason, then it's time to find one who will.  They are out there.  Good Luck. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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
      - knitty kitty replied to AnneBSunflower's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      mystery gluten?

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too. I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's. So antibodies aren't necessarily due to gluten ingestion. https://pubmed.ncbi.nlm.nih.gov/31149170/ Take a B Complex supplement and Benfotiamine...
    2. knitty kitty
      - knitty kitty replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      @Rejoicephd, Would you consider adding a B Complex to your supplements? I was taking a multivitamin and still became deficient. There's a question as to how well multivitamins dissolve in the digestive system. I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery...
    3. knitty kitty
      - knitty kitty replied to kopiq's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      almost a year in recovery - so many questions about to give up

      @kopiq, Your case is not hopeless. Doctors are not required to learn much about nutrition. Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals. The eight essential B vitamins and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies...
    4. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Struggling to get into a good pattern

      Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my...
    5. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,651
    • Most Online (within 30 mins)
      7,748
    SKM
    Newest Member
    SKM
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      mystery gluten?

      By knitty kitty · Posted

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too.  I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's.  So antibodies aren't necessarily due to gluten ingestion.   https://pubmed.ncbi.nlm.nih.gov/31149170/   Take a B Complex supplement and Benfotiamine, a form of thiamine shown to promote intestinal healing, and Vitamin C.  This study found a higher rate of thiamine and Vitamin C deficiencies in people with Hashimoto's.   https://pubmed.ncbi.nlm.nih.gov/37278003/   Try cutting back on the amount of iodine in your diet.  Iodine, even in small amounts, can stimulate the thyroid which in turn stimulates the immune system which increases antibody production.   Dairy and eggs are high in iodine.  Switch from iodized salt to Pink Himalayan salt.   https://pubmed.ncbi.nlm.nih.gov/9703374/   Supplement with Selenium, a mineral that helps the thyroid function and calms the immune response in the thyroid.   https://pubmed.ncbi.nlm.nih.gov/37033262/ Hope this helps!  Keep us posted on your progress!
    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
    • knitty kitty
      almost a year in recovery - so many questions about to give up

      By knitty kitty · Posted

      @kopiq,  Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals.  The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.   Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.   Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.   The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
×
×
  • Create New...