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

No follow up required??

Mph1213

Recommended Posts

Mph1213 Newbie
Mph1213
Posted

Hello everyone. Within the last 2 months I have been diagnosed with celiac disease by my endocrinologist who I see for Graves' disease. Upon learning that my blood tests came back sky high for celiac disease, I came back to speak with my endocrinologist on what to do next. They told me to of course begin a gluten free diet. They said I would not need an endoscopy or any follow up labs or appointments because I "will know if I am getting better from my symptoms". Does this sound like correct advice? Anyone else I've seen on here has had an endoscopy done to confirm and then does a follow up plan. My endo. also said once 'symptoms' are under control that I can eat gluten every once in a while because it doesn't make me physically sick but once again everything I see online says the opposite. I feel like I'm blindly being leaded, please advise!! I hate everything about this disease and then to depend on how I feel to know if I am cured just seems crazy as I feel different every day (am on HRT and anti-thyroid meds). Thank you for your time to read this :) you all are the best on here, always so helpful! 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
16 minutes ago, Mph1213 said:

Hello everyone. Within the last 2 months I have been diagnosed with celiac disease by my endocrinologist who I see for Graves' disease. Upon learning that my blood tests came back sky high for celiac disease, I came back to speak with my endocrinologist on what to do next. They told me to of course begin a gluten free diet. They said I would not need an endoscopy or any follow up labs or appointments because I "will know if I am getting better from my symptoms". Does this sound like correct advice? Anyone else I've seen on here has had an endoscopy done to confirm and then does a follow up plan. My endo. also said once 'symptoms' are under control that I can eat gluten every once in a while because it doesn't make me physically sick but once again everything I see online says the opposite. I feel like I'm blindly being leaded, please advise!! I hate everything about this disease and then to depend on how I feel to know if I am cured just seems crazy as I feel different every day (am on HRT and anti-thyroid meds). Thank you for your time to read this :) you all are the best on here, always so helpful! 

Run and find another doctor!  Your endo obviously is not celiac savvy!  If you have celiac disease you can never have gluten again.  Avoiding gluten is the ONLY known treatment for celiac disease.  Even a tiny crumb can harm a celiac by setting off a autoimmune flare-up.  I would also find a new  endo who might handle your Grave’s treatment better.  If he can not take the time to read Dr. Google and learn about celiac disease, I doubt he is keeping up in his own specialty.  

Some celiacs are asymptomatic.  So, you might not be able determine if you are healing by how you feel alone.  

Learn more about testing:

Open Original Shared Link

Learn more about follow care for a celiac:

Open Original Shared Link

 

Ennis-TX Grand Master
Ennis-TX
Posted

Your doctor is a complete quack, you need to get another like what cycling lady said. Celiac can be managed and you can heal but it requires a strict gluten free diet. Crumbs, residue, cross contamination from shared utensils and cookware can cause your antibodies to flare up for weeks and start damaging your again.

We do suggest a whole foods only diet for the first few weeks to boost healing and get you on the right track. Check out the newbie 101 section and I compiled a list of gluten free food alternatives. You might want to watch out and remove dairy and oats also as many people also have issues with these, you can try reintroducing them at a later point in time.

https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/119661-gluten-free-food-alternative-list-2017/

desirun Explorer
desirun
Posted

Ditto above. Run for the hills. Find a new doctor. There is nothing more toxic than a physician treating an illness he/she is not versed in and/or making up an unfounded treatment plan!  Good job following your gut, something IS way off!

 

Mph1213 Newbie
Mph1213
Posted
  • Author

You all are so amazing. Thank you so very much for the responses. I always feel 'weird' questioning a doctors orders but this just did not sit right with me. I will be contacting another doctor asap now that I know what I was told was not correct. Thank you all so much again! 

Archived

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

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


  • Member Statistics

    • Total Members
      126,922
    • Most Online (within 30 mins)
      7,748
    Renee23
    Newest Member
    Renee23
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Posts

    • Wheatwacked
      Symptoms and trying to figure this out

      By Wheatwacked · Posted

      Also ask for a test of vitamin D levels. I agree with knitty kitty that cyclical Thiamine deficiency may be the cause of your cycle.  Celiac Disease causes multiple vitamin and mineral deficiencies.   Itchy palms can be a symptom of iodine deficiency.  Low iodine levels can lead to dry, flaky skin on the hands and  body due to the disruption of normal skin cell regeneration caused by a lack of thyroid hormone production, which relies on iodine. Other symptoms are   fatigue, weight gain, sensitivity to cold. I take between 600 and 1200 mcg a day Liquid Iodine. It has improved my healing.  Strong Iodine and Lugols Solution are other options.  Start low and build up over time. Between 1970 and 1988 the dietary intake of Americans dropped by 50%. Perhaps this is why some can tolerate the bread in Europe?
    • Lkg5
      Guidance on next steps after the lab tests

      By Lkg5 · Posted

      Be cautious with vitamin D if you are female and post-menopausal.  I had to decrease my D dosage from 4000 IU/day to 2000 IU because of hormonal acne and unwanted facial hair - likely from an increased testosterone level from the D.  Finally relief!  I hope to keep my D level below 50 nm/l now.
    • knitty kitty
      Coping with celiac

      By knitty kitty · Posted

      Do you eat processed gluten free foods?  
    • Scott Adams
      Coping with celiac

      By Scott Adams · Posted

      You may want to wear an N-95 mask to filter out any possible gluten, at least when you handle the flour.
    • Scott Adams
      3 years with Celiac, now I appear fine.

      By Scott Adams · Posted

      It sounds like you've been on quite the journey trying to understand your symptoms and diagnosis. It’s great that you’re planning to consult a doctor for allergy testing, as distinguishing between a wheat allergy, celiac disease, or another gluten-related condition is crucial for moving forward. The fact that you’ve tolerated barley and wheat products without recent symptoms might suggest something other than celiac disease, but as you noted, the absence of immediate symptoms doesn’t necessarily rule out potential underlying damage, especially if celiac disease is still a possibility. It’s worth discussing whether you should undergo updated testing, such as genetic testing for celiac markers (HLA-DQ2/DQ8), or even revisiting an endoscopy if appropriate. In the meantime, keep documenting your experiences with food and symptoms—it could provide valuable insights for your healthcare provider. It’s also important to test for other possible causes of your original symptoms, like IBS, food intolerances, or even other autoimmune conditions, to ensure nothing is overlooked. 
×
×
  • Create New...