Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Evaluation By Dr. Fasano
0

6 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

(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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,394
    • Total Posts
      917,605
  • Topics

  • Posts

    • Can treatment for Giardia reverse active Celiac
      I haven’t found any large scale studies on this, but only a handful of individual case reports suggesting that in rare cases giardia can temporarily mimic celiac (both the serology & villous atrophy) until it is treated.   I think this is a  complex matter as giardia effects patients differently (most are asymptomatic whilst others suffer from chronic symptoms including malabsorption) for reasons that may not be well understood. In my case - My GI agrees that Giardia can directly cause villous atrophy that cannot be distinguished from Celiac.  As the healing of the villi can be a slow process, I will schedule a repeat endoscopy 6-12 months after my giardia was treated.   Ttg antibodies can also take 6-12+months to completely normalise, especially if the starting levels are high. 6 months would have elapsed at the end of this month, so will schedule a repeat test, hoping for a normal Ttg result to prove the theory.   I have decided to remain on a normal gluten diet until it can be proven that I’m a celiac and not just suffering from a giardia infection.  I have reason to be optimistic as my Gliadin IgA levels are negative (not iga deficient) and also given the sharp decrease in ttg levels 4 weeks after giardia was treated.
    • celiac disease is psychosomatic
      It took all of 3 years before ALL of my symptoms resolved and it was the neuro ones that were the last to go.  If you have been careful about your diet, then you may not be getting glutened as much as you think.  It sounds like you have been careful because you are questioning things you should question to get clarification on.  I am sure if you were doubtful, you would refrain from eating something until you know for sure. Neuro symptoms can last for much longer than other symptoms.  Please be patient because my last neuro symptom was the one that took 3 years.  Have you been tested for vitamin deficiencies?  The B vitamins are important for neuro health, especially B12.
    • Week late aftershock!?
      I had a similar problem, I was glutened after a meal out at the beginning of April and am still experiencing problems, obviously not as bad now, but bad enough.  I have also become intolerant to  xanthan gum since, which cuts down the foods I can eat even more. I'm already intolerant to dairy, soya, and a whole lot of other stuff.  Cyclinglady is right about the auto-immune disorders, and I've noticed I have similar problems to her.  I too, eat easy to digest foods until the glutening symptoms pass. The sinus infection might also be a reaction to the glutening, it effects people in different ways.
    • celiac disease is psychosomatic
      Thanks, I'll check out the information in the link. Do you remember how long you were on a gluten-free diet before your vertigo disappeared? I have been on the diet for 2 years, but I might be glutened from time to time since I am not an expert food label reader. My dizziness still persists.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,528
    • Most Online
      1,763

    Newest Member
    MooCow27
    Joined