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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 get this pretty badly off and on--I sometimes scratch till I bleed without noticing (until I see the blood under my fingernails. I've never even associated it casein, but I also don't really care to go casein free with all of my other food intolerances. It's definitely the worst for me when I'm approacing ovulation, so there's definitely a hormonal component for me. Nothing I've done has really helped all that much, so I just live with it...begrudgingly.

  2. My GI told me that he could test for intrinsic factor whether I was deficient or not, so he just did a simple blood test. I still take my shots now that I'm no longer deficient, but I definitely stretch them out a lot longer than I used to. Now that my B12 levels are so high from years of shots twice a month, I don't really need to worry about a sudden dip. B12 can stay in your system for a very long time, so by the time you get deficient, it means you've been deficient for a very long time. When I need a shot, I can definitely feel it throughout my body.

  3. It sounds like the lunch is too important for you not to go, and yet Chinese food except for at a few particularly accommodating places, can be difficult to manage gluten free. I have gone to many a lunch where I don't eat. I eat something extravagant and filling directly beforehand and bring a small snack in case I get hungry, but then I just order a glass of tea or a soft drink and go for the company. Of course people ask questions, and though they may sometimes feel uncomfortable with someone not eating, I don't let it bother me in the least. I just say I have way too many dietary restrictions to make it worth eating out and that I just had a lovely meal of ...[fill in the blank]... so you need not feel sorry for me.

  4. Dear Beth,

    I'm thinking about getting ready to try, and this summer I had my doc do a full workup. You'll want to do the standard CBC w/diff as well as all the B vitamins (especially B12) and folate as well. He did a lot more tests for me including calcium, vit D, potassium, etc. The problem is that my PPO didn't cover all of the tests for some reason that I'm still trying to figure out. The sooner you get off birth control, the better. I've been off for over two months and though I've gotten "periods," I'm fairly certain that I have not started ovulating yet--it can take some people months to ovulate after getting off birth control. You may want to check out Taking Charge of Your Fertility, which is a great book for understanding Fertility Awareness Method, which helps you to avoid or achieve pregnancy without chemicals or barrier methods. Good luck!


  5. These reporters at the Chicago Tribune seemed to be well informed about their research into allergy labelling. I still trust the gluten free bakehouse products because they are produced in a gluten-free facility, but I'll definitely think twice before buying some of the 360 Everyday WF products that say that they use good manufacturing practices to segregate products in the same facility.

    I was particularly surprised at the level of gluten found in Wellshire farms products-- up to 1200 ppms in the "gluten free" hot dogs!


  6. a lot of youth hostels, since they are catering to people who want to do things cheaply, have a small kitchen. I've survived on trips to Europe by going to the grocery store daily to get fruits, veggies, and gluten free muffins or croissants, kalamata olives, nuts, etc on days that I didn't have access to a kitchen. On days that I did have access to a kitchen, I'd just bring along a lightweight non-stick frying pan (got it at Ikea for $5), some foil, and a few napkins and plastic baggies and would just cook whatever meat product or pasta I could get my hands on in the grocery store. You'll have to bring one less outfit to squeeze in the cooking stuff, but it's totally worth it.

  7. I understand that people fall on both sides of this issue. Sometimes you might come here looking to have your spirits lifted with positive thoughts, and on worse days, you might just want to vent.

    However, lsmall05, there is no reason to take such a hostile tone in your post if you hope to raise the optimism on the board. If you have a low thresh hold for reading others' venting sessions, then just make an effort to read more selectively. "It's not the end of the world for those of you who think it is" followed by criticism of people on the board who are occasionally down about the challenges they face is not the way to get people to think more positively. You get out of this board what you put into it, so if some here have gotten a bit sensitive about your posting, it is because of the negative attitude with which it was submitted.

  8. I get this too, and it is not better gluten-free then it was before I went gluten-free. I use all non-scented products and I try not to take baths anymore even though I love them. My husband catches me even scratching in my sleep. Sometimes I end up scarring from the scratching, but not much that I do actually makes the itching any better. I've never considered this a celiac issue since it is no better since going gluten free, but it sure is annoying.

  9. There are reasons why some celiacs would want to see an endocrinologist. I was referred to one by my GI who is a celiac specialist because my osteopenia continues to get worse even with aggressive treatment. My husband and I are also thinking about children, so we need to know how long I should be off of osteopenia treatment before trying to conceive. These are questions that most GIs and PCPs are not prepared to answer.

  10. I've been recently are going to be going through test based on burning and numbness throughout my legs and arms. I've also had a MRI that showed my disc in my back are degenerate and are moving to my spine. I've also had a colonoscopy because there was blood in my stool. The doctors don't think that there connected, I do. The one doctor thinks that it could be neuropathy and the other thinks that there could be a calcium deficiency. Did you also have burning in your spine or have any other of these symptoms

    This is interesting. I've actually had the same symptoms. I didn't react very well to the sublingual B12, so I take injections of B12 every two weeks, and that has really helped the neuropathy symptoms. As far as the degenerated spinal disks--I've had that too, and my doctor told me that is a totally normal finding for a 29 year old because the disks do break down over time.

    I've had blood in my stool and occult bleeding of the GI tract on and off for about 4 years now. I've had 4 colonoscopies, 2 capsule endoscopies, 2 endoscopies, 2 small bowel follow throughs. They always find chronic inflammation, but then do not find the exact source of the bleeding, which is very strange since the stool tests and my ferritin levels show that I'm losing a lot of blood. They keep thinking it's Crohn's and then they don't find it. Let me know if they find the source of your rectal bleeding.

  11. I'm more worried about the second week when we are in paris

    Definitely go to Le Reminet in Paris--it's a restaurant right near Notre Dame, and the owners are a husband and wife team. The wife takes the orders and she has celiac. The husband is a chef and knows how carefully he needs to be about good sans gluten! I ate there three times and never got sick once. I usually don't eat at restaurants in the US, so this was a huge deal. P.S. The restaurant is expensive, but totally worth it!

    As far as dating, I agree with Elonwy--do more unconventional dates. When I started dating while gluten-free, I did activity-oriented dates like going for a walk in a park, going for on a hike, going bowling. You could even try doing a rock climbing wall, miniature golf, billiards, etc. Then if the person suggests going out to eat afterwards, you can either broach the topic after you've already made a great first impression, or you can say that you had a fabulous time and would love to do it again but you have to get home and just leave the celiac confession for the next date.

    Once things progress, you can prepare a picnic or invite the date over for a home-cooked meal, and the person will see that there are plenty of tasty options for people who don't eat gluten.

    It takes other people a long time to understand what you can and can't eat and the subtleties of cross contamination, so you have to be patient with them.

    When I first started to date my husband, he was only allowed to cook for me at my place on my pans and dishes, and I had to clear all of the ingredients first. He started with basics like crab legs, rice, and steamed artichokes with butter. Now he knows my diet as well as I do, and he's committed to keeping all forms of gluten out of the house so that there are no potential issues. If his Mom shows up for a visit with a package of Wheat Thins, he just throws them out and tells her to respect my diet. The right partner will act that way.

  12. Jacqui,

    I'm sorry you're going through this. None of the neurologists have mentioned MS? I had numbness and tingling in my extremities and my tongue, but they went away after I started taking B12 injections for my B12 deficiency.

    I've been tested for MS several times now because of the combo of B12 deficiency, peripheral neuropathy, and trigeminal neuralgia, but each time that the MRIs, optical nerve tests, and nerve conduction tests come back normal, my neurologist just attributes these things to some sort of inflammatory process associated with my celiac disease and says that I should consider myself lucky that it isn't any worse than that. And frankly I do--I'm managing the trigeminal neuralgia with Neurontin, which has actually been great for my gut. And the B12 shots aren't bad at all.

  13. I just went to a celiac/UC specialist at Hershey Medical Center (PA) and she was great. I was misdiagnosed with UC last year. Asacol actually caused paralytic ileus for me (paralysis of the colon)--I was in the hospital for the week fasting for a few days and then liquids only. The doctor seems reasonably convinced that I have Crohns, which I'm really not happy about. I'm going in next month for a gastroscopy and a capsule endoscopy.

  14. I just went to a celiac/UC specialist at Hershey Medical Center (PA) and she was great. I was misdiagnosed with UC last year. Asacol actually caused paralytic ileus for me (paralysis of the colon)--I was in the hospital for the week fasting for a few days and then liquids only. The doctor seems reasonably convinced that I have Crohns, which I'm really not happy about. I'm going in next month for a gastroscopy and a capsule endoscopy.

  15. I had guests stay for a week, and at home we only cooked gluten free and it was great, but they ended up going out to eat quite a bit and bringing back all sorts of left-overs. Once there was some gluten in the house, they went out and bought candies, cake, and other things with gluten in them, leaving the crumbs all over the place (including the counter, the fridge, my desk, etc). There were definitely some cross contamination issues that caused some problems for me. A strict gluten free policy is the best policy when it comes to house guests.

  16. I forget the name of the pernicious anemia test--I'm not sure my doctor ever told me what it was. I also eat a lot of foods rich in B12, but because of the pernicious anemia, I can't absorb any B12 that is put in my mouth. I'm glad that you were checked at the beginning of the pregnancy; at least it hasn't been a long-standing problem. After a shot or two (or sublingual B12), you should be back up to normal.

    Good luck in your last weeks!

  17. Annaem,

    It takes years for B12 levels to drop because B12 is stored in the body for a long time. It's possible that you were B12 deficient before you got pregnant. You may want the doctor to do the antibody test to see if you have pernicious anemia. In the meantime, B12 injections are a quick way to get the levels back up to normal. My doctor prescribed B12 injections for me every two weeks, but plenty of other people on the site use sublingual B12 as well, a pill that dissolves under your tongue. This can be purchased at a health food store. Regular vitamins that contain B-12 don't help those with pernicious anemia because the digestive tract cannot absorb the nutrients.

  18. Jestgar,

    The pics are beautiful. Before I was diagnosed, I also flew into Milan and took a train to Cinque Terra before going throughout Italy and Switzerland. It's such a long hike between all of the towns--I could do it at 22, but I'm not sure that I'd have the stamina for that anymore. I'm impressed! Where did you eat when you were there? I imagine you just had fish, which is what I did, but I know that I also filled up on bread. yikes!

  19. An MRI is never fun, but I had one last fall with gadolinium, and I didn't have any problems with it. I got a migraine, but I'm pretty sure that was from the noise of the machine and the stress of the situation. Good luck. I really hope it's not MS. For me, they were convinced that it was, and then decided otherwise, thankfully.

  20. I'm glad you've decided not to deal with the sketchy sale on ebay.

    As far as the dress is concerned, the new one is beautiful, and your co-workers should mind their own business. I'm getting married in March, and I only bought one dress, but I tried on over thirty dresses--if I purchased the ones that I thought were nice, then I would have had 10 dresses, but luckily I waited until I found "the one," just like I waited to find "the one" before getting married.


  21. As others have mentioned, B12 doesn't have a toxicity level. It is important that your levels are high enough. That being said, I'm not sure which lab your doctor uses, but I get my B12 checked frequently for Pernicia anemia (low B12) and the test have always said that normal is 200-1100, so you are only slightly elevated. B12 can stay in your system for decades. If you are taking sublingual B12, then discontinue it completely, you don't need it. Otherwise, it shouldn't cause a major concern for you.

  22. I'm sorry to hear about the potential diagnosis, but I urge you not to worry too much about it until you have the tests conducted.

    Last summer I had what appeared to all my doctors to be an episode of relapsing MS. I even had some tests come back abnormal, which helped to confirm this diagnosis. Later, other tests came back normal, and they weren't sure what to make of it. I had been on the gluten free diet for over two years at that point, so it appeared to be unrelated to celiac. Ultimately, it turned out that I had pernicious anemia, like Georgie mentioned, and after having the B12 shots, I started feeling much better. In addition, I had developed a garlic and onion allergy that caused much of the joint pain and other issues I was having, and trigeminal neuralgia was the culprit for the blinding pain I was having along the trigeminal nerve. I've recovered (with the exception of occult bleeding), and the doctors ruled out MS completely. I really feel as though I spent several months feeling terrible physically, but the pressure of believing that I had MS did not help my emotional state either. This is why I suggest you hope for the best--MS is frequently misdiagnosed, and there's a good chance that you don't have it as well. Good luck and keep us updated on your condition.