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NicoleAJ

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NicoleAJ last won the day on June 28 2019

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About NicoleAJ

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  1. I have "electrical charge" pain all through my face, and my sinuses are always hurting, although not infected.

    Is this "electrical charge" pain on only one side of your face, or only on one side at a time? It actually sounds a lot like trigeminal neuralgia, and there's a fairly high correlation between trigeminal neuralgia and untreated celiac disease. Often people who have trigeminal neuralgia also get migraines since both seem to result from a functional problem with the trigeminal nerve. You may want to talk to your doctor about it. I was diagnosed with trigeminal neuralgia a few years after my celiac diagnosis, so controlling the diet does not control the pain for me. But it's fairly common to prescribe anti-seizure medications. I take neurontin, but usually Tegretol is the first thing they'll try for trigeminal neuralgia. I often get migraines associated with my trigeminal neuralgia as well.

    Also, a few years back, I got a status migraine--one which did not let up for over 48 hours, and I had good results with taking predisone to get the inflammation under control.


  2. I know a few people have mentioned Zadin in San Francisco in some recent posts. I just wanted to add some background that I found out during a recent visit. One of the co-owners Bao, is the sister of my friend Hai. So we just went to Zadin on Saturday night and had a great meal where I ate chicken pho (a noodle soup), calamari, and a Redbridge beer. Bao explained that a good friend has celiac and that they used to have regular meals with this group of friends, so the people in the group decided to learn about gluten free cooking in order to be able to cook for their friend. This is why they understand cross contamination. They don't fry the calamari in the same oil with anything containing wheat, and they use rice flour instead of wheat flour in their dishes. Not all of their dishes are naturally gluten free, but many can be made gluten free.

    I have pretty much stopped going out to eat at most restaurants since cross contamination has been a real issue for me in the past. But I was able to eat at Zadin with total confidence. In fact, when the waiter brought a dessert to the table, he made sure to tell me not to eat it because it was one of the foods that was not gluten free.


  3. Hopefully it's nothing, but it's always good to get it checked out. I go through periods where I have significant amounts of blood in the stool--sometimes bright red and other times black. They never find the source of the bleeding when they scope (upper and lower), so generally I just have to wait for it to go away on its own. The GI always thinks its Crohns and then can't find the source. Be prepared for the fact that the doctor will do the best he or she can to find the source and tell you what to do about it, but as long as they rule out the serious stuff, it might just be something you end up living with.


  4. Bluesman and GeordieLass,

    Thanks for your insights. I'm actually really excited about going to the Cook House. I had heard about St. John's Lodge, but honestly I got a little turned off some of the reviews of tripadvisor.com. The owner had written several snarky comments in reply to some of the travelers' reviews. And though I'm sure some of the negative reviews weren't warranted, it just left me unsure of whether or not the place was any good. But now that I know it offers such great service for celiacs, I'll have to be sure to check it out when I return.


  5. My only experience with antispasmodics are when I was misdiagnosed with IBS. The Levsin actually dehydrated me and masked some of my celiac symptoms for several years--it wasn't until I got so sick that I had to be admitted to the hospital that they realized that it was celiac instead of IBS. I'd just be careful since the drug doesn't actually heal anything.


  6. I do a lot of the same stuff as everyone else--wine, tequila in margaritas, rum in pina coladas. I also really like Fox Barrel Cider--it's quite tasty and not as sweet as Woodchuck. But for an occasional treat, I make a really mean sangria. In fact, I'm inviting several friends over for a Mexican feast on Saturday, and I'm going to make some pitchers of sangria and margaritas.


  7. has anyone ever frozen fried fish? If so, how did you reheat it. I just made the most delicious fish and chips for dinner tonight with wild cod, but we couldn't finish it, so I stuck it in tupperware in the freezer. I guess I was just hoping that it would be a bit like fish sticks--that it would hold up to freezing and then heating back up in the oven. What do you think?


  8. I tend to agree that it's odd that he doesn't brush his teeth before going to bed, and while it's not a good sign that he whines about not eating crackers in bed, it takes some people a bit more time to adapt than others, especially if all of this is happening at once.

    Tell him if he brushes his teeth, you'll make it worth his while, and then follow up with positive reinforcement.


  9. I was diagnosed with osteopenia at 27 and the doctor put me on Fosamax for a year. A year later my osteopenia had gotten a good deal worse, so the doctor wanted to switch me to Boniva. I took it once or twice, but it caused major upper GI problems for me. Then I started to read how bad it could be to conceive a child with these types of drugs in your system, so I stopped taking medication for it. I've been taking calcium and vitamin D daily along with getting as much as I can in my diet. I also do a lot of walking and 3x a week on the elliptical. I haven't gotten a bone scan recently, so I'm not sure it my efforts have been working.


  10. Thanks for the recommendation for the place in Mendocino--I'll have to check it out some time soon. The place I actually ended up staying, The J. Patrick House, was completely clueless about gluten free issues, and they wouldn't even heat up the food I brought in a separate container for breakfast or dinner in the microwave. In fact, I have no idea how, but they managed to get a good deal of gluten into either the orange juice or the tea because within 30 minutes I was so ill that I actually broke their toilet. This was two weeks ago, and I'm still not feeling 100%, so it was definitely gluten exposure rather than anything else. I would definitely recommend that no celiac ever go to that B&B. The room itself was fine, but the bathroom was dated and the wall were way too thin, so it certainly wasn't worth the high prices they were charging.


  11. Thanks SGWhiskers. I definitely should be more consistent with times of day that I check my cervix. I'm sure I'll become a lot more familiar the longer I do this. I just hope that my periods start coming a bit sooner together. It's funny that during my teen years I wished I would never get my period because it was so intense and frequent, and now I wish it would come much more often then it actually does.


  12. Stress can push back the time when you ovulate, and as a result you can get a little break through bleeding. If the problem were persistent every month, then certainly you'd want to have it checked out, but for right now, try to do something to cope with your stress. If you have not been 100% gluten free for a while, you can definitely have some odd menstrual problems stemming from celiac. It's likely that your periods will settle back down after you've gotten through this rough patch. Hang in there. :)


  13. I do all the same sorts of things as all of you on flights themselves, but I have another idea if you are going to a place where you will be unable to cook and need to make sure that you're not relying on questionable restaurants or energy bars for days. I've done this a few times now, and it's worked out really well.

    I'll make several meals that are high in nutrition and flavor--gluten free chicken and veggie stir fry with a small side container of rice, Moroccan chicken kabobs with grilled veggies, gluten-free pasta bolognese. I freeze all of these things overnight, and then I pack them in a small cooler, seal up the cooler (sometimes with some blue ice, but never with actual ice since it would melt and get runny), and put it in my checked luggage (you are allowed to do this on domestic flights for sure, but I doubt it would work on international flights because of customs). I got on 10 hours worth of flights from a small town in CA to Boston, and when my luggage arrived in Boston, the food had only just started to defrost. I had access to a fridge for medically necessary foods at my b&b for my entire three day trip, and I never had to bring small appliances, cook ware, etc. I had plenty of really yummy food to last me through my trip, and I didn't have to be high maintenance at my best friend's wedding in trying to find ways to cook or risk cross contamination at restaurants.


  14. So I've had "lady issues" since I was 12--first with violent, long-lasting painful periods that would last over 14 days, give me a few weeks off and then return with a vengeance. My doc put me on low dose birth control at 15 to control the symptoms and to get me to have more regular periods. I stayed on it until I was about 21 and then I went off of it to see if my body would self-regulate. My periods were normal for a while until I got into a car accident and had an ovarian cyst burst--then for the next several months, I had cysts burst on a regular basis, which is extremely painful. So my doc put me back on birth control to stop the cysts from forming.

    I've been married for over a year now, and we'd really like to try to conceive soon (I'm 29). I feel healthier than I've ever felt--I've been vigilant with the diet. My blood levels and nutrient levels are all in great shape. I'm taking prenatal vitamins to prepare. And I've been off of birth control for almost 5 months. And I've read Toni Weschler's book and have been using FAM ever since. Unfortunately, I'm having really abnormal cycles. I know this is somewhat normal after coming off birth control, but I was wondering if any of you out there are charters who might know more about FAM than I do. And specifically if there are any things I should know or ways I should accommodate for having celiac and using FAM?

    My first cycle was normal and lasted 36 days. But last cycle was 53 days, and I'm currently on day 50 of my next cycle. I keep having a situation where my fertility signs seem to align but then I don't get my period, I don't have 18 days of high temperatures, and I don't test positive for a pregnancy. In other words, on day 16 I'll have fertile fluid followed by a thermal shift, but my cervix won't be in the right position; then on day 28 I'll have fertile fluid, a thermal shift, and my cervix in the right position. But then 7 days later, my temp drops below coverline for several days followed by another period where it seems like I'm ovulating again.

    My temperatures are low, and I wonder if this has anything to do with it. My average pre-ovulatory temp is 96.7 and my average temp after a thermal shift is about 97.5. Am I just being impatient--is this all just a side effect from coming off of years of birth control, or is it possible that these odd cycles are telling me something about my system, and are they at all related to celiac? For instance, could gluten exposure on day 28 stress me out enough to prevent my body from actually releasing the egg, so the clock resets and I ovulate later? I did have an accidental glutening this past weekend, and I don't know if that did anything?


  15. I had no problems at all going to Maggiano's on the the strip and asking for fettucine alfredo with gluten free pasta. It was yummy.

    I would, however, call the hotel ahead of time and be firm that you will need a mini fridge in the room for medical necessity. All hotels should be able to accommodate on that issue--the one issue that gets tricky is whether or not they will provide you with a microwave in the room. Most hotels will do it if you speak to a supervisor, but some cause problems. I had A LOT of problems trying to be accommodated at the Wynn in Las Vegas. Arthur, the desk manager, was extremely rude and condescending when I requested the mini-fridge that had been scheduled to be put in my room before my arrival (and never arrived)--it took hours to get it, and then the microwave issue is a whole other can of worms. Needless to say, I complained to corporate headquarters about his conduct and do not feel that they took any of my concerns seriously.

    I would highly recommend that you stay anywhere other than the Wynn, which has, by far, the worst customer service and the worst policies regarding guests with multiple medical problems that I've ever seen. In fact, while I was complaining to Arthur's supervisor about his conduct, the management actually mistreated a wheelchair bound man in his 80s in front of his outraged daughter.


  16. Gemini and Nikki,

    Thank you so much for the info and advice! I had found Lucy's in my research, but there are just so many other places out there--it's good to know that I shouldn't have much of a problem. I went to Leeds last February and really didn't have a problem eating gluten free and finding free from foods in the grocery stores, but I just wasn't sure about the lake district. I can't wait to go. It's funny because I just stayed in a B&B in California this past weekend and had a horrible incident of gluten exposure; after I recovered, I just couldn't help thinking about how much better things will be when we stay in Windermere at 1 park road, where they specifically cater to coeliacs and special diets!


  17. I was also vitamin D deficient last year, and my doctor recommended the 50,000iu prescription as well, but then I spoke to my gyno, and she said that there have been mixed reviews about what those levels of vit D can do if you get pregnant while you're on them. I've been taking decent levels of vit D and calcium daily but not doing the super doses since we're going to TTC soon. I've been feeling MUCH better since bulking up on my vitamin D.


  18. This summer I'm going to the Lake District in England with my husband for a delayed honeymoon. We want to stay in a b&b or hotel that has a gluten free breakfast. We already found a great one called Jenkin Hill Cottage, where they specialize in gluten free breakfasts and dinner, but unfortunately it's a small place and is already full for the time that we'll be there. I also noticed that the St. John's Lodge in Windermere makes gluten free breakfasts and emphasizes the importance of avoiding cross contamination, but they have received mixed reviews online because some guests have felt that the walls are too thin and that there are too many rules and restrictions. We'd love to have a nice time at a beautiful place without having to worry too much about food, and unfortunately, I have several additional food allergies that make it difficult for me to travel. Does anyone have any suggestions about a nice gluten-free place to stay in the Lake District?


  19. I'm going with my husband to a nice little B&B in Cambria, California on the central coast for our one year wedding anniversary. I'll of course bring plenty of food, but I was hoping that we might be able to eat one meal out at a nice place. I already looked at Central Coast Celiacs for ideas to no avail--we live in San Luis Obispo, so there's no way we're making the drive back down to SLO for an anniversary dinner once we've made it up to Cambria. I do have multiple food intolerances so I generally don't eat out at all, but if anyone knows of a particularly accommodating place, I'd really appreciate it!


  20. It depends on what your B12 level was before you started getting the shots, but B12 is stored in the body for a very long time. You'll have to be the judge on how long you want to wait for the shots based upon how you're feeling. One word of advice though--have the doctor write a prescription for the cyanobalimine and the syringes and then have a nurse in the office show you how to administer the injections yourself. I did this a long time ago and couldn't be happier about my decision. I was so sick of having to schedule shots and pay copays and go out of my way for B12 shots. My doctor prescribed them once every two weeks, and once I had gotten up to a certain level, he left it up to my discretion how often I would do the injections. Now I know when I need one, and it's a lot cheaper to buy the prescription than to pay copays and waste my time.

    I thought I'd just add that I tried to fill a prescription for the nasal spray about a year ago, and it was over $300 for a one month supply on my insurance (needless to say I did not fill it). My syringes and B12 only cost about $15 for 12 shots, which is less than I'd pay for a supply of sublingual B12 which may or may not be effective.