What Type Of Doctors, What Tests And How Frequent?

[KnightRobby]

Hello everyone. I am fairly new here, so thanks for all of your help with this. I am wondering how I go about staying on top of Celiac Disease and knowing my progress. Also, what type of doctors should I see for Celiac Disease? As I just recently found out I have this, I really don't know who exactly to see. I've heard it would be good to see a Nutrionist, but what exactly would they do besides help plan out what I eat?

Also, how do I go about knowing my progress? And do I need a more specific test to check to see how damaged my small intestine is?

I just see so many doctors as it, with my chronic pain and all, so this is going to be quite the chore seeing these new doctors. Just be blunt with me and let me know who I should see.

Thanks yet again!

[sa1937]

I see a gastroenterologist and was diagnosed following a positive celiac panel and then an endoscopy/biopsy but I've never had chronic pain. What kind of doctors are you seeing now?

I never did see a nutritionist or dietitian but I have more than a few years of cooking under my belt and just didn't see the need for me personally.

[kareng]

Who diagnosed the Celiac Disease? Perhaps you should follow-up with that person?

Google "Celiac centers". There are several, like the Univ of Chicago, with easy to understand info. I think you were referred to the " Newbie" thread in one of your other threads. Stop a minute. Take a deep breath. Read. A lot of your questions will be answered in an organized fashion.

[nvsmom]

I think many get checked 6 months to a year after starting a gluten-free diet to ensure their bad lab numbers are going down, as well as to check vitamin levels. I plan to get rechecked after about 6 months to see if my elevated ttg IgA and EMA have gone down, and to check my vitamin levels, which were good when I started my gluten-free diet but I take a LOT of vitamins and if my absorption is increasing I don't want to over dose on some fat soluble vitamins.

I never had the biopsy since I had a positive blood test, so I won't do a follow-up biopsy. Personally, I think biopsies are over-relied on for diagnosing celiac.

I am managing my celiac with a GP. GI docs don't often see celiacs up here unless it's causing extreme GI issues. I didn't see a nutritionist, but I'm the type who likes to read and research things for myself so I felt it was not needed. There are some good books out there. I really like Dr Green's Celiac Disease: A Hidden Epidemic. Celiac for Dummies is good too. Grab a few books from the library and read up. There are some really good gluten-free cookbooks out there too.

For your chronis pain, you might want to look into other AI diseases like Hashimoto's thyroiditis, Lupus, RA, UCTD, MCTD or Sjorgen's. I have some pain issues myself and have found that celiac has not solved them (so far) so I am looking into other areas. It does take a long time to heal from celiacs so there is a chance your pains could improve from the gluten-free diet many months down the road. It took years to get to this point so it will take some time to fix it.

Good luck.