Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Evaluation By Dr. Fasano

BabsV

By BabsV
in Doctors

Recommended Posts

BabsV Enthusiast
BabsV
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

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

BabsV Enthusiast
BabsV
Posted
  • Author

(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.

IrishHeart Veteran
IrishHeart
Posted

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:

kittty Contributor
kittty
Posted

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. :)

IrishHeart Veteran
IrishHeart
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.