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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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BabsV

Evaluation By Dr. Fasano

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Yes, I am woefully behind in getting this info posted. Sorry.

After what I considered substandard care post-diagnosis I decided I would see a specialist when we returned to live in the U.S. I was happy to find that Dr. Fasano was about an hour away from where we'd be living so made an appointment. I called in April and was able to get an appointment on July 31st (he only sees patients once a week and there'd been a cancellation.) If I hadn't taken that appointment I would have had to wait until mid-late September.

So don't expect to get in quickly!

As for the actual appointment, it fit my expectations and basically went as follows:

1. Check-in

2. Get weighed, blood pressure checked, etc.

3. Meet with one of the team doctors (along with trailing medical student...University of MD is a teaching hospital after all!) to discuss history, why you are there, etc.

4. Team doctor goes to consult with Dr. Fasano

5. After team consultation Dr. Fasano comes to talk with you and gives you recommendation for course of treatment

6. You then meet with the nutritionist and then the nurse who asks if you would be willing to participate in their ongoing study...basically it means they can use your medical file (I agreed)

7. The end!

I liked that all the staff were friendly and helpful. I did not have to wait for length of time to get into the appointment -- mine was at 1pm and by 1:10pm I was talking with the team doctor. Speaking with doctors who know, really KNOW, about Celiac Disease was a relief -- the team doctor took one look (upside-down since I had it in my hand) of a copy of my biopsy report which I'd brought and said, "Oh yeah, you were at Marsh 3," which is something no other doctor had ever volunteered before! Plus they find it 'worrisome' that I am still anemic a year post-diagnosis. All my other doctors didn't seem to worry about it...

I brought copies (and translations) of all my medical records related to my Celiac diagnosis which made the staff all very very happy.

I left with a nice list of tests to either repeat or have done -- I needed additional blood tests to check vitamin levels, a bone density scan (since that couldn't be done in Poland due to the machine being "serviced" for 6+ months!), and Dr. Fasano wants another scope to check to see if there is an 'organic' explanation for my continued pain issues. Dr. Fasano is trying to have it become standard that all Celiacs have another scope a year post-diagnosis to check on levels of healing regardless of symptoms.

The team doctor told me the continued pain is not uncommon in Celiacs who are diagnosed as adults...often because we heal so slowly compared to kids. Great. But they all agreed that the pain issue was NOT "in my head" and they wanted to work to eliminate it or decrease it as much as possible. That was heavenly to hear after doctors telling me to "just relax" and hey, "take this antidepressant"?!?!?!

Once all my test results are in they will review my file and let me know if I need to come back to see them or if I can just work with my local doctors under Fasano's recommendations.

I didn't walk out with any immediate answers but just having my suspicions of lack of adequate follow-up was somewhat of a relief plus having a plan of action versus the whole "take antidepressants" approach was great.

If you have the time, opportunity and money (I keep telling my husband how thankful I am he's got a good job with decent health insurance benefits!) and are experiencing continued health issues I recommend seeking out a specialist if there is one remotely close to you.

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Babs,

I know we have discussed this already, but I have to say it again:

I am so very glad you are home !!! and that you received the proper follow up care you deserve. (we all deserve)

(and on top of everything else, Dr. Fasano is rather good looking, to boot. ;) )

Thanks for the report and I hope you continue to feel better and better.

xxoo IH

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(and on top of everything else, Dr. Fasano is rather good looking, to boot. ;) )

He is indeed. I almost asked to get a photo with him BUT with the team doctor, the medical resident and my dear hubby also in the room it seemed a little on the fangirl side to do so! Hehehehe.

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He is indeed. I almost asked to get a photo with him BUT with the team doctor, the medical resident and my dear hubby also in the room it seemed a little on the fangirl side to do so! Hehehehe.

Oh man, you should have gone for it, Babs!! you should have taken one for the celiac girlfriend team!! :lol:

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But they all agreed that the pain issue was NOT "in my head" and they wanted to work to eliminate it or decrease it as much as possible.

What magical words! I would love to hear this from a doctor just once. :)

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What magical words! I would love to hear this from a doctor just once. :)

I finally heard it, but I was 54 years old.

Hope you do not have to wait that long, hon.

If it helps, I'll tell you:

The pain is NOT all in your head. It's not.

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