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Evaluation By Dr. Fasano
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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.

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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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