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

Do I Need A New Doctor?

someday

Recommended Posts

someday Rookie
someday
Posted

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???

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

Celiac.com Sponsor (A8-M):


Tephie Apprentice
Tephie
Posted

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

CarlaB Enthusiast
CarlaB
Posted

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.

cyberprof Enthusiast
cyberprof
Posted
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.

hathor Contributor
hathor
Posted

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.

Gemini Experienced
Gemini
Posted
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.

Archived

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

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


  • Member Statistics

    • Total Members
      131,677
    • Most Online (within 30 mins)
      7,748
    shayansh
    Newest Member
    shayansh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.