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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Do I Need A New Doctor?


someday

Recommended Posts

someday Rookie

Hello. I have been nagging my doctor for months about all of my problems and I think I might need a new one. He is a really nice guy though so I hate to just find someone in a phone book to change to. Way back in Jan, I started to lose a lot of hair. I had been sick forever of course. My doctor found out I was anemic and started injections. Long story, but now I'm diagnosed and gluten-free. My hair stopped falling out for about a month after I went gluten free and now is falling out faster than ever. I have gone back to him and asked him about it. There are other symptoms that I think are related to the celiac, but none quite as noticeable as the pile of hair every morning. He did blood tests and said I'm fine so don't worry about it.

Then my husband went in just for a regular check-up and my doctor started telling my husband that I must not be serious about the diet. (HELLO!) He also told my husband that things like budweiser are fine for me. (A point of contention between me and my husband.) Doesn't all beer have gluten? Why is he talking to my husband about my visit with him anyway? Is he allowed to do that without permission? The doctor also talks about my celiac and bloodwork when my mother goes to see him. I thought it would be good to have her doctor because she has lupus and I wanted my doctor to know about it in case I had it too. Now I'm not sure if having the same doctor is good or not!

Anyway, I'm not sure what to do now. If all my bloodwork is fine, why am I losing so much hair? I am more than a little frustrated with the doctor for all of his comments to my husband, but I really hate to have to switch doctor's since I don't know of anyone better anyway. Any ideas???

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Tephie Apprentice

A second opinion wouldn't hurt. See if you can find a local Celiac group that might have suggestions on a reputable dr. Hope you get feeling better soon.

Stephanie

Link to comment
Share on other sites
CarlaB Enthusiast

I would ask him, to his face, why he is discussing your case with other people you have not given him permission to discuss it with. That breaks doctor/patient confidentiality.

How did he diagnose you? How long have you been gluten-free? What are your symptoms?

Budweiser is NOT okay. Budweiser does make a gluten-free beer, however, called Redbridge.

Link to comment
Share on other sites
cyberprof Enthusiast
I would ask him, to his face, why he is discussing your case with other people you have not given him permission to discuss it with. That breaks doctor/patient confidentiality.

Not only is it unethical, it is illegial under federal law(HIPPA) to disclose your private info UNLESS you specifically give permission. When you ask him, tell him that you did not give him permission and you are specifically asking him under HIPPA to cease violating your privacy.

Oh, and good luck. I don't have any advice about the hair but I hope you find the cause.

Link to comment
Share on other sites
hathor Contributor

My opinion on the question you ask in the thread title: "Yes." I would advise your husband and mother to go to someone else also. If it were me, I would tell him flat out that what he has been doing is unethical and illegal.

I know it is tough to find someone else. But he doesn't even seem to know much about being gluten free (recovery can take time and beer obviously isn't gluten-free if made with barley) and his cavalier dismissal of a symptom like significant hair loss is disturbing. If he doesn't know what he's doing AND he talks about you behind your back, I see no reason to continue to see him.

I hope you can find out what is causing the hair loss and correct that. I wonder if it is due to a nutritional deficiency of some sort or another food intolerance. You aren't going to find an answer from a doctor who says you are fine & don't worry about it.

Link to comment
Share on other sites
Gemini Experienced
Hello. I have been nagging my doctor for months about all of my problems and I think I might need a new one. He is a really nice guy though so I hate to just find someone in a phone book to change to. Way back in Jan, I started to lose a lot of hair. I had been sick forever of course. My doctor found out I was anemic and started injections. Long story, but now I'm diagnosed and gluten-free. My hair stopped falling out for about a month after I went gluten free and now is falling out faster than ever. I have gone back to him and asked him about it. There are other symptoms that I think are related to the celiac, but none quite as noticeable as the pile of hair every morning. He did blood tests and said I'm fine so don't worry about it.

Then my husband went in just for a regular check-up and my doctor started telling my husband that I must not be serious about the diet. (HELLO!) He also told my husband that things like budweiser are fine for me. (A point of contention between me and my husband.) Doesn't all beer have gluten? Why is he talking to my husband about my visit with him anyway? Is he allowed to do that without permission? The doctor also talks about my celiac and bloodwork when my mother goes to see him. I thought it would be good to have her doctor because she has lupus and I wanted my doctor to know about it in case I had it too. Now I'm not sure if having the same doctor is good or not!

Anyway, I'm not sure what to do now. If all my bloodwork is fine, why am I losing so much hair? I am more than a little frustrated with the doctor for all of his comments to my husband, but I really hate to have to switch doctor's since I don't know of anyone better anyway. Any ideas???

Alopecia is the medical term for hair loss and it can be an autoimmune problem. If you have celiac disease, then you would be at higher risk for alopecia. It's another one of those things doctors do not connect the dots on! I would go to an immunologist and see if there is a test for it.....I'm sure there must be.

Your doctor is a jerk for discussing your medical issues with anyone, without your permission. You need to find a new one who knows what he is talking about. Also, did you know lupus is concurrent with celiac disease? It's autoimmune in nature and listed as one of the diseases that's linked to celiac disease. If your mother has lupus, she could have celiac disease.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,498
    • Most Online (within 30 mins)
      7,748

    Kim.cervone513
    Newest Member
    Kim.cervone513
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...