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What Type Of Doctors, What Tests And How Frequent?
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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!

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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.

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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. :)

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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.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
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