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Member Since 14 Jul 2013
Offline Last Active Jun 10 2014 06:08 AM

Topics I've Started

Primary Care Doc In Nyc/brooklyn?

11 May 2014 - 12:17 PM

Hi all,


Does anyone know a decent primary care doctor in NYC (ideally Brooklyn, but i don't want to get too greedy with my wishlist)?


I was diagnosed w/ celiac almost a year ago and am still struggling to feel healthy again (despite never eating out and following a totally paranoid diet). I know it can take more than a year to feel better, but between the gastro stuff and the fatigue and all the other weird symptoms, it's making it pretty hard to live my life : )


At this point, I'm thinking more and more that I have some other issue going on (autoimmune, or gastro, or other types of foods that are bothering me), but my current primary care doc has been pretty useless in helping me to pursue those, and the nutritionist i started seeing hasn't even heard of FODMAPS... I see a great GI doc at the celiac center, but after diagnosing me w/ a B12 deficiency he pretty much left me on my own to address/monitor it, so that's my most urgent reason for finding a new primary care!


But in general I would LOVE to find a primary care dr who would help me to monitor stuff like that, and to investigate the different possibilities for why I'm still so sick. If anyone has a primary care that they like, I'd be so grateful for suggestions!


Thanks : )

Still Feeling Awful. All The Time.

08 February 2014 - 09:50 PM

Hey all,


I've posted here a few times before - I got diagnosed with celiac last June, at first felt much better (briefly), and then kept getting glutened about once a month for the next several months (and made the fun discovery that my symptoms are crazy severe and last for about 3 weeks - paralyzing depression/anxiety/brain fog, then bad pain/gastro stuff/vomiting, then exhaustion and brain fog and continuing gastro stuff that hangs on a long time). 


So at the start of November, after getting glutened twice back to back and getting just ridiculously ill, I got super super strict. No restaurants, almost no prepared foods except some gluten-free pasta, peanut butter, canned tomatoes etc. No dairy (just in case), and no alcohol, no anything I thought remotely might bother me. Basically I've cooked every single thing I've eaten for the last 3 months...hoping it would result in feeling at least a bit better.


I had my antibodies checked in December and they were already down to normal levels (under 20), which shocked my doctor. So that's great news, but I still feel like crap, constantly. Even since November, I still  get D pretty much daily (usually a few times a day), plus pain - I've had a few stretches of weeks at a time where I'm in bad pain after every time I eat, or it just comes on suddenly for no reason. And I'm exhausted and struggle to focus a lot of the time (and since around the holidays, I've started getting these bouts of just ridiculous exhaustion where I can't get warm, all my limbs feel heavy, I'm wobbly or walking into walls or dropping stuff, etc, and it'll last 2-3 days at a time). And all kinds of other weird symptoms that come and go too.


I finally got an appt with a PCP this past week who seemed decent since I haven't had a consistent one for a long time, and she drew a ton of blood and said she's testing me for basically everything she can think of (thyroid,deficiencies, and then a long list of increasingly scary stuff...). It's tough starting with a new dr who doesn't know me at all (and vice versa) in the middle of all this, I feel like there are so many issues to go over that I'm probably missing important things or phrasing stuff wrong. But now I'm waiting indefinitely for results to come back (not sure if I'm more terrified they'll find something really awful, or that they won't find anything and I'll go back to thinking I'm just crazy). i'm planning to try an elimination diet soon too in case other intolerances are the issue, but I'm just not quite up to taking on everything all at once.


But what it comes down to is I've been sick almost constantly for 7 months now with no real explanation, and I'm just not sure how to keep dealing with all this. I'm also in a very demanding job which I do like, but I'm thinking I'll have to face up to quitting it soon if things don't get better. And me turning into a constantly melted-down, exhausted, can't go out to eat/drink anywhere, needing to cook all the time person is starting to put strain on my relationship too, which feels even worse. And I'm only 25! I feel like my life's turning into something I can't really understand anymore.  I'm not sure I really have a question, but if anyone's been through stuff like this or managed to deal with dr's successfully and figure out/fix symptoms that just would not go away, I think I could use a pep talk... : )

Dealing With Getting Glutened?

06 November 2013 - 07:57 AM

Hey everyone,


So I was diagnosed with celiac back in June, been doing my best to avoid gluten like the plague since then, but I still seem to get glutened about once every few weeks. Unfortunately my reactions are pretty delayed-  i don't feel it for a day or two - so it's really hard to pin down the causes. Especially the last two times, I honestly have no clue - one was after a visit to my boyfriend's family where I made my own food but in their kitchen - I was being really cautious about what I used, but I may have just been unlucky. And then just two weeks after that, I got glutened again, this time no idea at all what it was. I think maybe an Amy's meal I had for lunch? I do eat those pretty frequently when I don't have time to cook/pack lunch in the morning, but I've read other people have had problems with them.


I'm going to try eliminating the Amy's meals, but this just seems to keep happening to me, even when only eating foods labeled as gluten free, and only eating (rarely) at restaurants that are either dedicated free or are rated by a lot of people as safe on find me gluten free, so I feel like unless I literally eat nothing but a few very plain foods and completely stop eating at any restaurants or other people's houses, it's kind of inevitable that this will keep happening.


The part I'm really struggling with is that my symptoms from gluten are pretty bad, and last usually 3-4 weeks - so basically as soon as I've started to feel actually better, I get glutened again. This time I got glutened 2 weeks apart, so I'm really at a low point now, haha. The first couple of days are the worst, I seem to get completely depressed/anxious/crying for no reason, and just totally unable to think or cope with the most minor stuff (which isn't like me usually at all) - and generally some really unpleasant gastro stuff as well. Then I have another few days where the emotional stuff calms down, but I just feel exhausted and still struggle to think/focus on anything (plus weird neuro stuff, like blurred vision and losing my coordination in my hands - I broke two dishes in a day, once, in this phase). And then the part that lingers is the gastro stuff comes back again, and I'll just be in pain/really uncomfortable/running to the bathroom a few times a day for 2-3 weeks until my system finally calms down.


This is already longer than I meant to write, but I guess what I want to ask is how do you all cope with it in terms of the rest of your lives when you get so sick? I started a new (really demanding!) job right before I got diagnosed, and I'm trying not to take too many sick days after all the time I had to take for testing etc, but sometimes I just can't make it in to work, or I drag myself in and then barely get anything done all day. My manager has been pretty understanding so far, but I haven't explained to everyone I work with how much this has been affecting me - it feels like such a lame excuse for falling behind on stuff...and my boyfriend has been wonderful and very supportive, but I feel bad for just lying on the couch feeling sick so many nights when i come home...


I guess any suggestions/wisdom you all have on how to keep up with the rest of your life when you get glutened, or reassurances that I'll get better at avoiding glutenings as time goes on, or suggestions for meds/remedies to help deal with symptoms in the short term would be wonderful!!



New To Celiac - Trying To Plan For 2 Day Meeting Out Of Town?

14 July 2013 - 11:45 AM

Hey everyone,


I'm newly diagnosed with celiac a few weeks ago, and just started at a new job a week before that (very exciting!). I've been feeling amazing in those few weeks since I stopped eating gluten, which has been wonderful, but I'm still trying to figure out all the social situations/logistics of eating at restaurants etc - and I don't know how sensitive I am yet to contamination and things like that, so I'm feeling really paranoid about everything. I had my first experience getting glutened at a supposedly gluten free restaurant Thursday and I'm still feeling the after effects, blech : (


My big worry right now is I have a 2 day "retreat" for the new job coming up in just a couple days, with all of my new bosses and some other new colleagues - so I really don't want to make a big deal out of all my new-found food issues! I talked to the person organizing the meeting and she said "oh, a couple other people eat gluten free too, so don't worry, there will be gluten free food with all the catering." I'm regretting now I didn't press her for more specifics - I think the other people are gluten free by choice, which is great since it means they're already planning on gluten free food, but I don't think they have the same contamination concerns that I do. There's also a big dinner on the first night - I looked up the restaurant she said she was considering, and they don't have any menu posted online (it's some kind of barbecue place).


The city the retreat is in isn't exactly the type of place with tons of special diet/gluten free options, so I'm not sure I can trust the catering or the restaurant. But the person organizing the food is out of the office now until the retreat starts, so now I have no way to get info on who's catering or what restaurant it will be. Should I just bring all my own food for the 2 days? (I won't have a fridge at the hotel, though, and I'm taking mass transit out there so I'd like to pack lightly). Or should I just pack a few snacks and trust the "gluten free" catering/restaurant and hope I don't get sick?


I'm also not really sure what questions to ask the restaurant, since I haven't done any eating out yet - and I'm not even sure where it will be since when I called the place I had been told, they said the reservation wasn't actually confirmed yet, so I may not know until that morning where it will be.


I know this is a lot of questions, but if you guys have any advice on dealing with business catering/traveling/restaurants, and also on how to deal with these food problems in work situations in a way that doesn't make you come across as super needy/crazy, i'd be so grateful!!

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