Jump to content
  • 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):

Boston- Four Thumbs Up!


StephanieL

Recommended Posts

StephanieL Enthusiast

My son and I went to Boston a few weeks ago to see Dr. Fasano.  Aside from Celiac disease he also has life threatening allergies to peanuts, tree nuts, dairy and egg.   This was the first time flying for us and the first time being out of town without access to a kitchen for more than a day. 

 

We had an AWESOME time!!   I had some help (Thanks again Gemini!!!  My Boston personal trip planner ;)

 

We stayed at the Wyndham near Mass General.  There is a GIANT Whole Food right behind that you can get to through the back door of the hotel!!!  Awesome!

 

I shipped a Pantry box from the A place that is always bleeped out on here for spamming ;)

 

Eating out:  I will say that my kid doesn't eat out often. Our expectations are pretty simple, get my kid food he'll eat that is SAFE and we're both happy!  Simple whole foods with minimal processing is a-ok to us!

 

Ruth's Chris Steak House on School Street- Went for lunch. He had a roasted 1/2 chicken and steamed broccoli. He LOVED the crispy skin!!  (like i said, simple is great and no reaction is even BETTER!)

 

Legal Seafood- Long Wharf-  AMAZING!  I emailed them several weeks prior.  On a Friday night the manager called me and assured me they could 100% accommodate him, he entered the reservation himself and told me that he would make sure he was on duty when we came!  Can you say AWESOME!  I looked at the gluten-free menu and saw fries- I held my breath as I asked my allergy Mom questions.

 

DS had grilled shrimp, FRIES, corn on the cob and grapes.  He was in absolute HEAVEN!  He wolfed it down in no time at all!  I asked if he wanted anything else, more shrimp!  Now on the second order they brought it with some kind of sauce.  I sent it back and the manager assured be it was gluten free.  I said what about all the other allergens, they again assured me it was fine...... I wasn't willing to test it so I asked if I could kindly just have grilled shrimp again and they got it for us and again, DS had it eaten in a minute! He asked to go back the next day ;)

 

The Dean's List at the Wydham in Blossom St.- This was where we stayed.  When we were returning from a long day on the way to eat crackers and cereal in the room the chef was talking with someone so I figured what the heck, I'll ask.  He assured me he could make DS some chicken and broccoli (see a theme here?? lol  It's what he eats at home at least once a week so he was excited to be eating it out! lol).  We went upstairs and washed up and then came down for dinner.  He again ate everything and loved it!!! 

 

 

So being a first letting others cook for him several days in a row, they all hit it out of the ballpark!  He loved every minute of it and while I worried after each meal as I always do, we didn't have any issues!!!  We had an awesome trip and he's still talking about it!!

 

IMG_2442.webp

 

IMG_2441.webp

 

IMG_2498.webp


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



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

Awesome Stephanie.  Your son looks very happy. and the pic with Dr. Fasano, The Celiac God, is awesome.

 

Colleen

Gemini Experienced

This is so awesome, Stephanie!!!!!!!!!  I finally get to see what the little guy looks like and what great photos they are. The one with Fasano is great.....especially since I have seen the one of Fasano in his bathing suit from the Celiac Convention in Florida.  Thanks to Irishheart, that's the image that always comes to mind when I see a photo of our Celiac Doctor God.    :lol:   Ha, Ha!!!!!!

 

I am so very happy that everything worked out well with DS's food during your stay and if you guys come back, for any reason, I will come into town to meet up with you. You have to come back because I know DS wants to.  That's what happens when your kids start traveling.....they like it!  ;)  

StephanieL Enthusiast

OMG!  I am SO glad that you did not tell me that story before we saw him or I don't think I could have looked at him with a straight face! lol  Yeah, DS's been planning out our next trip since before we even left!  At one point he was planning on moving us all there!  He was just telling our sitter today about Legal Seafood and how it was the best part of the trip! lol  We'll let you know when we come back which would be tomorrow if it were up to him! lol

IrishHeart Veteran

I told you if you got him in to see  Dr. Fasano it would help!! whoohoo! I am so happy for you!!

 

And Boston is my hometown, so I am especially pleased for you. I knew Gem would help you out! She's my homie-sistah!! LOL

 

Good for you, Stephanie and good for your boy!

 

If you want to see the pic of me with Dr F (in his swim trunks,,,I can hook you up   :)  he's my hero, too. 

Truly, just the best man to have our collective celiac backs. 

 

I was so delighted to have a chance to meet him and talk with him for a while. And his presentation

was absolutely the high light of my trip to the conference. It's why I drove 4 miles round trip to see him. 

 

 

 

Open Original Shared Link

StephanieL Enthusiast

Well we still aren't getting anywhere yet... I am waiting (not so patiently ;) ) to hear back from them about our next steps but we shall see. 

 

As for the picture...NOOOOOOOOO!  We may have to go back and see him again! lol  Just out of curiosity though is it one of those "Hey looks who I took this sneaky shot of" picture or was it a posed picture? 

 

Edited: I just saw the link and the picture.  I was on my phone before and didn't see the link.  How funny!  He didn't seem shocked at all when I asked for a picture with him. He asked if I wanted to be in it! lol No thanks ;) lol

GottaSki Mentor

No, it is an excellent full shot of four beauties smiling poolside in Orlando (including IH)....I can post it if you'd like ;)

While I also love our Dr. F.....my favorite photo above is the pure joy on your son's face....aside from the medical aspects....this trip did so much to encourage both of you to travel....priceless!

Nicely done Gemini and Irish....don't forget that itinerary...my trip to Boston is still in the works...best guess today is November :)


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

Alright...now I want to see it!!! Post away!

 

This trip did SOOOOOO much for both of us.  It forced me WAY outside of my comfort zone but if I didn't have this push (even though it sucks that we are having these issues) I don't know that I ever would have made the leap!  You are so right about what it did for him!  I see stuff all the time about kids with allergies being scared to even eat at school.  Pushing the limits is making him see all he can do and THAT is what I want him to grow up knowing!

 

Now if he would just get back to me ;) lol He's only in the office on Thursdays so my fingers are crossed for tomorrow but I am not holding my breath! 

 

I think I could be persuaded to meet up with you fine ladies in Boston for a little ME time!  I loved it!  As a side note I took my Burberry purse there to be repaired and it came home to me today!  Perhaps I need to go back and buy the one I really wanted ;)

GottaSki Mentor

http://glutendude.com/wp-content/uploads/2014/04/rock-stars.webp

Gluten Dude, Jules Gluten Free, Dr. Fasano and our own IrishHeart :)

LauraTX Rising Star

The picture of you son in a state of absolute joy just made my day.  I am so happy you guys had a good experience!!!  I want to go meet gluten rock stars now!!! LOL

Gemini Experienced

No, it is an excellent full shot of four beauties smiling poolside in Orlando (including IH)....I can post it if you'd like ;)

While I also love our Dr. F.....my favorite photo above is the pure joy on your son's face....aside from the medical aspects....this trip did so much to encourage both of you to travel....priceless!

Nicely done Gemini and Irish....don't forget that itinerary...my trip to Boston is still in the works...best guess today is November :)

You're coming to Boston in November??????????  I hope so, for totally selfish reasons!  That would be great!  Stephanie and DS should come too.  And anyone else who wants to join in the fun.  I am keeping November wide open....... :D

IrishHeart Veteran

You're coming to Boston in November??????????  I hope so, for totally selfish reasons!  That would be great!  Stephanie and DS should come too.  And anyone else who wants to join in the fun.  I am keeping November wide open....... :D

 

 

ack! I can't go north in NOVEMBAH. fah cryin out loud!! ...I gots no boots, hat, scarf, mittens, coat ... :lol:

StephanieL Enthusiast

You're coming to Boston in November??????????  I hope so, for totally selfish reasons!  That would be great!  Stephanie and DS should come too.  And anyone else who wants to join in the fun.  I am keeping November wide open....... :D

 

I'll come up to supervise you ladies! God only knows what would happen if you came across Fasano in a dark restaurant! Or followed him to his car at the end of the work day! lol

 

ack! I can't go north in NOVEMBAH. fah cryin out loud!! ...I gots no boots, hat, scarf, mittens, coat ... :lol:

 

Oh come on!  I'm sure we can wrangle up a pair for you to borrow! lol

IrishHeart Veteran

I'll come up to supervise you ladies! God only knows what would happen if you came across Fasano in a dark restaurant! Or followed him to his car at the end of the work day! lol

 

 

 

 

 

I was alone with him in an elevator, too............ B) 

StephanieL Enthusiast

 

 

 

I was alone with him in an elevator, too............ B) 

 

You're starting to creep me out now!!! lol  snort!!!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis
      12

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

    2. - Jmartes71 commented on Scott Adams's article in Summer 2026 Issue
      5

      Court Ruling Raises Big Questions About "Gluten-Free" Food Safety in Retirement Communities (+Video)

    3. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

    4. - Scott Adams replied to N Young's topic in Doctors
      1

      Frustrated with Providers

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,117
    • Most Online (within 30 mins)
      10,442

    coeliacmamma
    Newest Member
    coeliacmamma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • BelleDeJour
      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
    • Scott Adams
      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten-free, that you have a long history of dermatitis herpetiformis and strong clinical response to the gluten-free diet, and that celiac disease remains your working diagnosis unless properly reassessed with a supervised gluten challenge, which you may not want or need at this stage. This should help prevent future confusion. It is understandable to feel frustrated, especially after decades of being dismissed, but this may be fixable with a calm conversation and a chart correction rather than changing doctors.
    • Scott Adams
      These articles may be helpful:    
    • Jmartes71
      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
×
×
  • Create New...