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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! 

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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:

http://www.cureceliacdisease.org/screening/

Learn more about follow care for a celiac:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

 

Edited by cyclinglady

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

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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!

 

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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! 

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