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NicoleAJ last won the day on June 28 2019

NicoleAJ had the most liked content!

About NicoleAJ

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  1. Well done! More must be done to make universities aware of the need for accommodating celiacs--even if that accommodation consists of an exemption from dining services. I'm really skeptical about their supposed understanding of cross contamination. Just because you can see them cook the food doesn't mean that there's nothing in it, the pans, the utensils, the cutting boards, etc that isn't gluten free. In the early days of my diagnosis, I would watch my mother-in-law cook something for me and then would get violently ill--seeing is not believing that it's completely free of gluten.

  2. Yeah, I usually don't get sore breasts before my period, but this is definitely mostly located in the nipples as well. I'm usually a stomach sleeper, but I just can't sleep that way now because of the discomfort of it. I'm on day 10 of high temperatures and 3 days after potential (?) implantation, so I'm going to wait so as not to be disappointed by results that are just too early. Here's hoping! And thanks for the support.

  3. I'm sure that early pregnancy symptoms differ greatly among women, but I was wondering if any of you who have gotten pregnant after diagnosis have noticed or found any research on early pregnancy symptoms in celiacs--are there any discernible patterns to expect except that "everyone's different"?

    Sorry if this is TMI. I ovulated 9 days ago and had temporary light brown spotting on day seven--ever since I've been hungrier than normal and more fatigued, and I've had sore breasts. We definitely had some baby-making activity during my fertile window--I never know when I'm going to ovulate since my cycles and fluids are so erratic. DH and I would be thrilled to have a baby on the way, but waiting for the point where I actually can test is killing me, so hearing about other celiacs' early pg symptoms might help to shed some light on this for me.

  4. When I was in the hospital for 8 days, I was assured that I would have gluten free foods. I even talked to the nutritionist on staff about it, but as she said, her orders do not always go through, particularly when it comes to issues of cross contamination. They kept sending me pasta, bread, rubbery-looking salisbury steak. Of course I was also on a liquid only diet while I was there, and so the food selection was particularly inappropriate for my needs. My husband brought me gluten free broth, gluten-free popsicles, and ensure, which the nurses kept in their fridge in the nurses' station and heated up for me at meal time. I worked out find since I couldn't eat solids anyway, but I realized just how vulnerable I would be without my husband there to bring the food in for me.

  5. I have moved into many apartments since my diagnosis, and some of them end up being filthy when I move in. Cleaning out and lining the cabinets and drawers in the kitchen and scrubbing the fridge/freezer is important--you'd be surprised what can be left in a fridge after someone moves out--I once found a pubic hair in one of the apartments I rented in grad school. Yuck! If you plan to use the broiler pan that comes with the oven, then you'll want to check on its condition. If it's new and looks clean, then you can probably get away with a good scrubbing or trying to clean it with oven cleaner and rinsing it out really well in the sink. But if it's not new/clean, you may just want to buy yourself a new broiler pan--you can just store the one that came with the apartment in a closet and when you move out, put it back in place and take your new broiler pan with you.

  6. If you can't tolerate the sublingual B-12 because of the additives you find in them, then the injections are not a big deal at all--if you are low in B12, the doctor can either have you come into the office to get the injections or can have a nurse teach you how to do them at home and write you a prescription for the B-12 and the needles. Unfortunately, the B12 nasal spray is insanely expensive (at least on my insurance it is). I think that official normal levels are in the 200-1200 unit range, but you should really be up over 400 units since between 5-10% of the population actually gets neurological symptoms if they dip below 400.

  7. There were definitely some intentionally inflammatory or confrontational statements in this article, which, cumulatively take an adversarial tone towards those who go gluten free for reasons beyond an iron-clad celiac diagnosis. And I could have done without those diagrams since discussion of the Atkins diet does not have a causal effect on the coverage of gluten intolerance in the media, which is a completely different issue altogether. My main problem, though, is that this article gives greater reign to idiot brigade. Have you read some of the comments to the article, bashing everything from celiacs to those who modify their diet under any circumstance?

    I posted the following in response to someone who insinuated that all of the detractors of the article were one person who signed on with several screen names, and this one person obviously lacks "fine reading comprehension":

    "I actually have a Ph.D. in literature from a top university, so I'd bet that my reading skills are better than most. Though I wouldn't necessarily "rage" against this article, I do find it to be irresponsible. When people play fast-and-loose with the issue of gluten free food and access to gluten free products, it inhibits the rights and the perception of those who suffer from celiac disease. Period.

    I was diagnosed with celiac disease five years ago after several medical struggles, and over that period I've been fortunate enough to benefit from several new products and places providing gluten free offerings. However, in recent months it seems that there has been an epidemic of uninformed celiac- and gluten-free bashers. Five years ago, when I'd tell someone I had celiac disease, the person would rarely know what I was talking about--he or she would look at me like I had 3 months to live and would not be able to accommodate my needs at a restaurant, for instance. More recently, when I tell someone I have celiac disease, I am increasingly greeted with tirades about "fad diets" and lectures about how many diseases X uneducated person believes are all in people's heads. Whether someone goes gluten free because of a concrete celiac diagnosis, a diagnosis of gluten intolerance (yes, that is a term accepted and described in medical research and literature), or because the person notices positive health benefits, it does not have an impact on the author of this article or on any of the people who have posted on this forum. The decision to go gluten free is generally one made between a patient and his or her doctor, and it's a choice that should not be criticized or discouraged by every uninformed person off the street. Does Daniel Engber have a medical degree I don't know about somewhere?

    It is now believed that 1 out of every 100 people suffers from celiac disease, and only a very small percentage of these sufferers has been diagnosed. I say keep the gluten free foods, products, and awareness coming because they are life-changing and life-saving to so many of us. For the gluten free bashers, hopefully it doesn't turn out that you are one of us."

  8. I get severe bleeding, clots, mucous, occasional black stools after I've been glutened, but I also get these symptoms at random times when I know for certain that I have not been exposed to anything glutenous. I will generally bleed for weeks or months at a time, and then it will go away as mysteriously as it appeared. Every time I go to a new GI, they say, this is probably Crohn's--they do the blood tests that show low folate, they do the rectal exam to see that there is a presence of blood, they do the tests that show occult bleeding, and then they do a colonoscopy and find absolutely nothing wrong there and figure it's coming from the ilium. Unfortunately, every time I get a CT or barium X-ray, they are completely unable to visualize the ilium, and though they've tried capsule endoscopies, they cannot biopsy with a capsule endoscopy.

    Rectal bleeding can be very serious and a sign of a worse condition. For me, it's become a norm, and I just live with it, but only because the doctors have done everything possible to find the source of the bleeding, and it doesn't seem to be an ulcer, cancer, etc. I would call the doctor again in hopes of getting a different receptionist or just say that you are having severe GI symptoms and you need to schedule an appointment. I'm sure the doctor wouldn't be as flippant or dismissive as his clearly uneducated receptionist would be about rectal bleeding.

  9. Every time I have ever had an ultrasound for any reason, the doctor has found one or more very large cysts on an ovary. Women frequently get cysts when the ovary releases the egg--it's just that some get bigger than others, and they generally dissolve on their own, unless there's some sort of underlying problem like PCOS. I have never had any symptoms from these cysts except for when they've ruptured. I had a period after a very serious car accident when I was having cysts burst frequently. My doctor gave me vicodin to take when it happened because it really was the most gut wrenching pain, and when I couldn't stand it anymore he put me on birth control to prevent me from ovulating. I stopped getting ruptured cysts when this happened. I've been off bc for 9 months now and have not had any cyst symptoms or burst cysts, but I am also not ovulating regularly for some reason. My 20 year old cousin had an 8 pound ovarian cyst that had wrapped itself up in her fallopian tube--she had some pain and incontinence, so this is when they discovered it. They thought it might be a tumor, but when they removed it, they realized that it was just a cyst. Months after the surgery she still had a giant indentation in her gut from where they'd removed the cyst--but that's the only time I've heard of someone having any symptoms of an ovarian cyst (unless it has burst).

  10. The problems may not be related to celiac at all. I'm 29 and used to have regular periods, but then I went on the Nuvaring when I started to have ovarian cysts bursting frequently. I've been off of birth control for about 9 months, and in the past 110 days, I've only ovulated once. I just went to my obgyn two weeks ago, and she said everything looks normal and my pap was fine, but I have oligoovulation--it's not really something that's dangerous, and it doesn't necessarily stem from something more serious (after running all of the appropriate tests). She said it's not really a problem, except that it can be more of a challenge to conceive since you never really know when you're ovulating. My grandmother, who's not from the side of the family that the celiac came from, used to have the same problem, and she ended up having 4 children, so for now I'll just cross my fingers that I'll ovulate again soon, but I won't really worry about it too much. The doctor said if I'm really anxious to get pregnant, I can try Clomid, but that at my age, it's not necessary.

  11. Gastritis doesn't necessarily have to be related to gluten. In the fall of 2007, after I'd been vigilantly gluten free for three years, I was having several GI problems, and I had an upper endoscopy. Among other things, they found severe gastritis (but no presence of H. Pylori or any direct cause of why it might be happening). The doctor tried me on a few different types of meds, but they didn't really help, so I ate really bland and easy to process foods for a while, and eventually it went away on its own (or at least I started to feel much better). I know this is not really a satisfying response, but I just didn't really find an instant cure or anything.

  12. I use the tube kind and cut it into little circles and either bake them on a sheet pan, fry them in olive oil, or grill them on the grill pan. Then I slice some mushrooms up and put them in a skillet with salt, pepper, and fresh thyme or rosemary, and when they are looking juicy and close to done, I deglaze the pan by splashing some wine on it and letting the alcohol burn off and the juices reduce. I then put the mushroom herb mixture with the reduced wine over top the polenta circles and put some shaved parmesan on the top. We eat this all the time with lamb or chicken.

  13. It has not been my experience that South beach is very celiac friendly, but maybe some of this has changed more recently? In fact, even before I went gluten free, I was never really impressed with much of the food on Lincoln road and some of it on Ocean Drive. However, all of the Publix grocery stores that I've been to have had at least some form of gluten free section, if you'll have access to cooking facilities. If you have a car, as the last poster suggested, Pizza Fusion in North Miami is good, and it's right next to a Publix grocery store. Also in North Miami/Aventura is a P.F. Chang's and a Houston's, both of which can accommodate celiacs. Also, if you'll be staying there a while, there's a Whole Foods just north of the Aventura mall (about 30-40 minutes from South Beach depending on traffic). Also, in Miami Shores (which is north of South Beach), there is a great little restaurant called the Village Cafe--you may want to call ahead to see if they can still accommodate celiacs, but when I was living in Miami Shores, I used to go there all the time for lunch and dinner, and they seemed very knowledgeable about gluten-free issues, and I never got sick eating there.

  14. I'm flying to London from San Francisco this Wednesday--you don't want to know how many hours that takes. I'm going to fry up some chicken tenders, roast some potatoes, and steam some green beans. I'll put it all in a little mini softsided cooler I have. I do a few things to keep things cold. 1) If you tell them it's for a medical condition, they let you bring blue ice. 2) in the instance I ever had to throw away the blue ice or something went wrong, I always take an empty 1 qt. ziploc, and then I fill it up with ice once I get through security at whatever food court is around. 3) I bring liquid type foods, but I freeze them completely, so they're still solid when I go through security. For instance, I just made some turkey chili last week. I put a small serving in a tupperware container and froze it, so I can put that in my little cooler. What I'll do on my flight from SFO to Philly is eat the chicken (because that won't stay as long as the other things). I'll eat the green beans and potatoes early in the Philly to London flight, and then by the time I'm hungry again, the chili will be defrosted, and I'll eat that. I also bring a ton of snacks--lara bars, nuts, dried fruit, etc. Of course, I'll have to toss the contents of everything before going through customs in the UK, but you won't have to worry about that.

    I once had to fly from PA to CA, and there were so many delays (and an emergency landing) that it took me 30 hours from door to door. I'd made quiche for the flight which started to look and smell questionable at about hour 8 or so, so I just starved in the interim--not pretty.

    Good luck and safe travels.

  15. I'm fortunate to have a husband who is willing to have a fully gluten free household and kitchen, and who can even shop and cook food for me, knowing what I can and cannot have. My mother is also really understanding. Unfortunately, it's my mother-in-law who, at times, tries to act understanding and then at other moments, when she's stressed or needs someone to pick on, reverts back to discussions of how I lead a sheltered life or that my diet is "insane." I smile and tell her that her son appreciates the fact that I take care of myself so well because he understands first-hand how awful it was when I had to go into the hospital on an IV drip for 8 days. She generally backs off then. But my husband has also been willing to give her a good talking-to when she needs it as well. It's great if you can have just one advocate in the family who can help back you up. If not, it's good to keep in perspective that generally those critiques are really rooted in some other issue or spring out of sheer ignorance.

  16. In case this helps anyone in the future, I wanted to let people know where I'm staying in London. I took Gemini's suggestion of going through citybaseapartments.com to find a reputable apartment in London with a kitchen. This is especially important to me for my trip back to the states, as I live in CA, so my travel time will be upwards of 13 hours. I'll definitely need to cook some food in London to bring on the plane with me home, and this will give me the opportunity to do so. I'm going to be staying in the Presidential Apartments in Kensington. All rooms have a full kitchen (range, microwave, fridge/freezer, dishwasher), free wifi, and air conditioning. The place just opened recently and is offering some great introductory rates. It looks great on the website, and the view on Google maps street view shows that the apartments face a beautiful garden square right near Earl's Court tube station. I'll let you know if the place ends up being as nice as it seems.

  17. Nicole.....try Hans Place. Do a search for "49 Hans Place" in Knightsbridge and this should take you to the apartment we rented on our last trip. I do not know what your budget is but their current quoted on-line prices start at about 150 GBP per night, per flat. We rented a larger, deluxe studio in this building and it was lovely. However, there is no AC, which did not bother me as we went in the cooler weather. I don't know how important AC is to you but you will be traveling in summer. When I went the exchange rate was a lot higher so these prices are good at the current rate.

    Their prices for this place include the VAT tax and service. 49 Hans was clean, in an awesome neighborhood (I saw many a Maserati and Ferrari parked on the curbs in the morning) and it's close to everything important. I never felt unsafe and had fun people watching the very wealthy. They really are different! :P

    A couple of things.......you are correct, renting a flat can be hit or miss. I learned from past experience to rent as much as your budget allows because it does make a difference. These flats at 49 Hans are in one of the most upscale neighborhoods in London and are right behind Harrod's. Gorgeous area with many restaurants and shops a stones throw away. My husband had to drag me out to the airport when we came home! :lol: The kitchens are small but serve their purpose well. I would also advise you to buy those toaster bags because the toaster will be unusable without them. In case you haven't heard of them, they enable you to put a slice of bread into the bag and toast it contamination free. They work awesome! These flats are also serviced, which is an added bonus.

    It works the same way as a hotel.

    If you stay in an area closer to the City of London itself, it will be noisier at night when you are trying to sleep. I found Kensington/Knightsbridge area's to be quieter and more residential at night. However, you are minutes away by Tube to the waterfront and touristy places of interest. Use the Tube, it's the fastest way around the city and much, much cheaper than cabs. You could actually walk through the parks to these places from Knightsbridge also, that's how close they are. A longer stroll but do-able. If you make use of the Tube, buy a Tube Pass from the States before you go and you'll save money and won't have to keep buying tickets.

    Do a search on this site and see what they have to offer. Renting an apartment is really the way to go and you can keep food there.....very important. Harrod's also has a fair amount of gluten-free stuff and a Food Hall to die for. If you find something and want to know if the area is good, post here and I'll help you out. I've been to London 7 times and I absolutely LOVE that city. It's a blast! I also found a few small patisseries on the main road from this place where I could get a gluten-free breakfast some mornings. The French places did a good job of that.

    Geez...all this talk about London, now I want to go again! :D When we do go, we have already agreed that we would re-rent this place again. The service was good and there were no hidden surprises, money-wise. I did rent this flat from a different company than this site but they advertise on other sites as well so I think who you go through won't make much difference. The deal seems the same. Happy hunting!

    Gemini--thank you so much for this reference. This place looks great! Air conditioning would probably be nice, but I'll look around the website to see what else they have that's available.

  18. Thanks everyone for your replies. I'm really excited about this trip and can't wait to try Cotto. I'll definitely check out the Whole Foods and the other places mentioned. The last time I was in England (in Leeds) I had good luck getting breakfast and lunch at grocery stores and then going out to dinner. And actually La Tasca's little chicken skewers are pretty good, as is the manchego cheese with tomatoes. I didn't try the paella though, and now I'm glad that I didn't.

    Gemini, is there a particular site you visit to rent an apartment? I've looked into the option, but so many of them seem to have their drawbacks. I've seen reviews on sites about this place being unclean and that place having awful plumbing problems or another place being in either a sketchy neighborhood or a neighborhood that is a little too far removed from all the great things the city has to offer, so I'm just not sure where to go for a reliable flat rental.

  19. In just over a month I'll be spending some time in London, and I have not yet booked a hotel. I have multiple food intolerances, so I generally try to avoid eating at restaurants. Usually when I travel in the U.S. I make sure that a mini fridge is put in my hotel room so that I can bring my own food, but I'll be gone for a while and going through customs and won't have a place to cook when I get to England. Does anyone know of a good hotel in London that has been helpful with putting a fridge in the room? If not, are there any hotels that seem to be in the vicinity of more gluten free food options than most? I know about Cotto Italian Restaurant and a few of the chains like La Tasca and Wagamama. I guess I was just wondering where people have had good luck staying in London. Thanks!

  20. I make risotto at least a few times a month. Every time I roast I chicken I end up making a large stock out of the carcass, so I use most of the stock to make chicken soup, but then I always reserve about 5 cups or so for risotto. It actually doesn't take much time at all, but the key to a good risotto is the order in which you add the ingredients--you don't want anything to get soggy.

    The best risotto I've made is a mushroom, crab, and pea risotto. I get dehydrated wild mushrooms--s$#&akes, black, oyster, etc and let them soak in warm water for 20 minutes. I then strain that water and put it into the stock to help flavor the risotto even more. I cook mushrooms in the risotto pan until done and then reserve them. After the process of ladling the broth and stirring the risotto, I wait until I'm one or two ladles full away from being finished with the risotto. This is the point at which I add one pound of crab meat, the reserved mushrooms, fresh peas, and 1/4 cup of dry white wine. I add the freshly grated cheese at the very end. The whole dish takes on the flavor of the crab, mushrooms, and wine and is totally fantastic. It may take a bit of time to do, but then you can do other things while the rice is absorbing the broth. Also, risotto makes great leftovers if you just add a tad of water into it before you put it in the microwave.

  21. I have to second the endorsement on Pizza Fusion. I emailed them to ask about the handling of the gluten free pizza, and this was their response:

    Hello Nicole,

    Thank you for your interest in Pizza Fusion! We take the safe preparation of gluten free pizza very seriously, and instill that care and attention to detail in our franchisees and employees as well. We have the crust prepared off-site in a designated gluten free facility, and each crust is individually wrapped to prevent cross contamination in the restaurant. We use separate, designated gluten free utensils and pizza toppings to make the pizza, and even cook the final product on a designated gluten free shelf in our oven. We do our best to prevent any chance of cross contamination in our restaurants, and have had local Celiac Society leaders in Florida tour our kitchens to help us streamline the process and make it as safe as possible. I hope that you enjoy your visit to our San Luis Obispo location when it opens next month, and please let me know if i can answer any other questions you may have about our products or our concept. Thanks again for your interest in Pizza Fusion!

    Best Regards,


    Ashley Rathgeber

    ~ Artisan of All Things Organic ~

    I spoke to my local Pizza Fusion owner, and he said that the person responsible for making gluten free pizza changes his or her apron, steps into a separate room, scrubs their arms up to their elbows to ensure that gluten doesn't get onto the gluten-free pizza, and then they use a gluten-free utensil to place the pizza in a separate part of the oven that is only for gluten-free pizza. I've never had a single problem with cross contamination there. They charge an extra fee for the gluten-free pizza ($5 in Florida, $8 in California), but it's a price I'm willing to pay to have them treat my condition with such care.