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

How To Approach Doctor With Celiac Concern?

Curlyqueen

Recommended Posts

Curlyqueen Rookie
Curlyqueen
Posted

I expressed my concern about celiac disease with my new doctor but she didn't seem interested however she agreed to send me to get a tTG blood test. How do you handle doctors who don't understand or are less knowledgeable on celiac disease?

Background: I'm currently waiting on a tTG blood test result from my new primary care physician. I have two primary care physicians because I moved for school. My original primary care doctor is in NYC and my new doctor is in Rhode Island. I have been dealing with Anemia for almost 2 years now. At first it was getting better then it got worst. I can't seem to keep my b12 levels up. its to the point I'm doing weekly injections myself and its still low. I can tell that its low because when I sleep I get tingling in my arms and I'm fatigued. Due to the low b12 I get migraines however, they aren't as bad as they use to be. My doctors can't seem to figure out whats wrong with me. I don't want to insult them but I think its celiac disease or gluten sensitivity. I have a lot of the symptoms( I didn't mention them all here) and they seem to be getting worst. To top it off I have an extreme alcohol intolerance. Maybe its not extreme but I can not drink alcohol and i use to be able to drink alcohol. I had a low tolerance but I could enjoy a beer. Now all it takes are a couple sips and its like i get sick instantly. Its as if it goes straight into my blood. I'm 22 years old and I would like to be able to drink alcohol, have energy, and most importantly I would like to know what is wrong with me. Problem is I don't want to insult my doctors by telling them what I think they should do which is a full celiac blood panel.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Don't worry about insulting your doctor, he is working for you. Go in with a list of your symptoms and simply request a full celiac panel along with a total IGA. Make sure you are eating a regular gluten filled diet until all testing for celiac is done and when that is finished do a trial of the gluten-free diet no matter what the results are. False negatives on both blood and biopsy are not uncommon so a dietary trial is always advised even if the testing is negative or inconclusive.

Curlyqueen Rookie
Curlyqueen
Posted
  • Author

Thanks! I needed that advice and wish I had did that a long time ago. I'm now starting to consider just going gluten free and see if I feel better. I would like to have an official diagnosis but it doesn't seem necessary.

  • 1 month later...
Curlyqueen Rookie
Curlyqueen
Posted
  • Author

Don't worry about insulting your doctor, he is working for you. Go in with a list of your symptoms and simply request a full celiac panel along with a total IGA. Make sure you are eating a regular gluten filled diet until all testing for celiac is done and when that is finished do a trial of the gluten-free diet no matter what the results are. False negatives on both blood and biopsy are not uncommon so a dietary trial is always advised even if the testing is negative or inconclusive.

It came back negative but within that time I went gluten free and felt a lot better. Now I'm seeing a GI because I'm convinced that I have a digestive issue of some sort if not a gluten sensitivity or intolerance. Is there a difference between intolerance and sensitivity? The genetic testing my GI did also came back negative so I'm thinking possibly gluten sensitivity. The weirdest thing happened, ever since I went gluten free my eczema which had been active for years came back out of no where and in new places. I thought going gluten free would make it go away...hhmm maybe theres an allergy I'm over looking.

Anyway thanks again for your original response it helped!

domesticactivist Collaborator
domesticactivist
Posted

If you just got rid of gluten and didn't replace it with "gluten-free" substitute stuff it could be that with the reduction of starch in your diet the candida or other bad elements in your gut flora are dying off. Die off is a good thing but can cause eczema to flare up, especially if it happens quickly. My partner's eczema flares every time we add a new probiotic food, or increase amounts too quickly.

It's also possible that you have an allergy to something new in your diet.

Or, it could be that with your immune system no longer reacting to gluten, it's all amped up and needing something to do.

Curlyqueen Rookie
Curlyqueen
Posted
  • Author

If you just got rid of gluten and didn't replace it with "gluten-free" substitute stuff it could be that with the reduction of starch in your diet the candida or other bad elements in your gut flora are dying off. Die off is a good thing but can cause eczema to flare up, especially if it happens quickly. My partner's eczema flares every time we add a new probiotic food, or increase amounts too quickly.

It's also possible that you have an allergy to something new in your diet.

Or, it could be that with your immune system no longer reacting to gluten, it's all amped up and needing something to do.

Interesting...at first when I went gluten free it was very sudden and I didn't use gluten free substitutes. Now I'm all about Udi's bread( I love it). But you brought to light something I didn't think about. I just thought that this might be a sign that gluten isn't necessarily the enemy but something else. Is this something that I should mention to my doctor? The fact that my eczema flared up after I went gluten free?

Thanks for sharing this is really something new to me. I'm going to try to do some more research on this. I appreciate the feed back.

domesticactivist Collaborator
domesticactivist
Posted

I do think it's very valuable to write up all the symptoms you've been having, whether they seem related or not. Maybe another person looking at them will have another perspective or see a pattern you have missed. Maybe just writing them out will alert YOU to a pattern! I would bring that information to my doctor.

Oh, and you could say it could be that gluten AND something else are the enemies. I felt like crap when I first went gluten free. We ended up doing the GAPS diet and I majorly improved. But now I'm doing a gluten challenge and any doubts I may have had that gluten was a primary problem for me are definitely settled.

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.

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. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    2. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms. My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea. But you say that you haven't got any bad abdominal issues, so perhaps you...
    3. Scatterbrain
      - Scatterbrain posted a topic in Sports and Fitness
      2

      Feel like I’m starting over

      Hello, I was newly diagnosed in January of this year (2025). Since then I have been strict about staying gluten free and only cooking at home. I started feeling better in July while gradually resuming close to my normal routine of activities and athletics. September and October were extremely stressful due to a new home build being finished and moving...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Your story is a testament to the critical importance of an early and accurate diagnosis. It's tough to read about what you had to endure, including multiple surgeries and hospitalizations, all while the root cause—celiac disease—remained undetected for so long. Your experience highlights the consequences of medical ignorance surrounding this condition and...
    5. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Guinness, can you drink it?

      This is why Daura Damm can be a sponsor here--at 3ppm or less it is gluten-free, and it's doubtful that anyone with celiac disease would ever have issues with such levels. Some people may be reacting to the yeast in the beer, but I seriously doubt that such beers could trigger elevated antibodies or villi damage--the science says such levels won't trigger...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,280
    • Most Online (within 30 mins)
      7,748
    newlife213
    Newest Member
    newlife213
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Feel like I’m starting over

      By trents · Posted

      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      Hello, I was newly diagnosed in January of this year (2025).  Since then I have been strict about staying gluten free and only cooking at home.  I started feeling better in July while gradually resuming close to my normal routine of activities and athletics. September and October were extremely stressful due to a new home build being finished and moving.  My spouse and I take care of his mom who has advanced dementia and have been since 2021.  We did all the moving as well as get the other house on the market for the month of October.  Since earlier this month I feel like I did back in the early stages of my diagnosis.  Almost all of my symptoms have come back except for the bad abdominal issues.  I haven’t changed my diet or supplements since January and wonder if the stress has caused a set back? Any thoughts are helpful.  Thanks
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is why Daura Damm can be a sponsor here--at 3ppm or less it is gluten-free, and it's doubtful that anyone with celiac disease would ever have issues with such levels. Some people may be reacting to the yeast in the beer, but I seriously doubt that such beers could trigger elevated antibodies or villi damage--the science says such levels won't trigger celiac disease issues.  
    • Scott Adams
      Related issues

      By Scott Adams · Posted

      I have to express some significant skepticism about the drclark cleansing programs you've mentioned. The claim that a specific, three-part parasite and organ cleanse is a universal solution for chronic health issues is a major red flag, as it oversimplifies the immense complexity of the human body and conditions like Celiac disease, which is an autoimmune disorder, not a parasite infection. Regarding your Celiac disease, the reaction you describe, while real to you, does not necessarily confirm a diagnosis; a delayed reaction is common with various digestive issues, and a definitive diagnosis typically requires specific blood tests and an intestinal biopsy, not just a provider's acceptance of symptoms. Furthermore, your mention of approaching mayors seems to misunderstand the role of local government versus federal policy; the deduction for gluten-free food is a federal tax law, and a mayor has no jurisdiction to implement widespread Celiac screening, which is a medical and public health decision far beyond a municipal leader's purview. It sounds like you are navigating a difficult health journey, but I would strongly advise consulting with qualified medical specialists and registered dietitians over relying on unverified online cleansing programs.
×
×
  • 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.