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lisaemu

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About lisaemu

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    SE Michigan

  1. Hi I finally found a good dr's! Its huron gastro in ann arbor, mi on st. joseph's campus, right behind EMU. Its a whole center for digestive care. I went there for the first time yesterday, and the drs were very nice. The dr I saw talked to me for quite a while (at least an hour i think) and agreed to test me for celiacs (my sister had tested positive for it, and i know i feel better not eating gluten) im also scheduled for a scope/barium enema there soon. i felt like they actually cared and werent blowing me off, and didnt even push medicine on me at all (now theres a suprise!) my boss and her daughter also go there, and said they love it there too. if anyone needs address or number or anything, let me know!


  2. I found an awesome gastrologist (in SE Michigan, if anyones curious) because I've been having very bad stomach problems for the past few years. He talked to me for a quite a while, and sent me for a blood test for celiacs (the complete panel? i had been tested before at a regular dr, but he said these can be inaccuate) because my sister had tested for celiacs a year or two from a blood test (tho they told her she doesnt have it, but im not sure why) i've read that you're not supposed to go gluten free before the testing, but ive stopped eating gluten and dairy since the visit (he asked me if there were certain foods that bugged me, and i told him wheat and dairy and he suggested avoiding these to see if it helps). im not sure about my test results yet, but i feel so much better not eating gluten that i dont want to go back! my question is...im having a sigmiodscopy and a barium enema in 3 weeks, am i suppposed to continue eating gluten until then? i used to eat gluten free a few months ago and i know the diet helps me a lot, but i started eating it again when dr's told me i just had ibs and should take medicine.


  3. I defiantely did NOT mean to imply that simply being a vegetarian caused gluten intollerance..I

    Whoa my computer just messed up and sent to early...I defiantely dont think being a vegetarian caused celaic/ gluten intollerance. It just seems a lot of people on here are former vegetarians. It probably does have something to do with the relience on "healthy" grains. I have read that eating too much of something can cause and allergy or intollerance to it overtime, is this true? This is all just so confusing, some times I just dread eating ebcause I dont know whats healthy for me/ what will make me sick! sigh...


  4. I've been reading through these message boards and a lot of people seem to be former vegetarian/vegans or currently are. I was just wondering if there is any kind of link between the two? I would love to be able to have a vegan diet because I feel its the ethical thing...but every time I do I end up extremely sick! Im not still not sure I have celiacs/ gluten intollerance (am not diagnosed as such, but feel best on the diet, and always have to come back to it after not eating meat for a while) Anyways..anyone have any thoughts about this, or notice this as well?


  5. I've gotten really fed up with having to be gluten free too. Just when I start feeling better, I "test" myse;f (purposely eating gluten). Im not officially diagnosed yet, so i always seem to second guess when i start feeling a little better. Most recent time was when I went to tennessee for the weekend, i got stuck at a buffet that was gluten FILLED. I was with my mom, who is trying ot be helpful about it, but doesnt fully get it. I figured Im on vacation, Im not officially diagnosed..lets see what happens. After wards I didnt feel all THAT bad (ok so some major bloating, but i figuerd ah well i can deal) so the whole weekend I wanted bread! Then i came home and bought bagels and cereals..and oh boy after about a day of that i was SICK. My stomach was in SO much pain, my whole body hurt, all i wanted to do was sleep, i was completely constipated, and I couldnt even move. All I could do was curl up in the fetal poistion, cry (and i am NOT a crier!) my mom had to come get me from college, it was awful and my boyfriend and mom were so worried. It seems to take forever to get it outta your system, no matter how small the amount of gluten. The last time before this when i "tested" myself...I ended up in the ER. Trsut me even though its frustrating sometimes...its worth it. Eating gluten is definately NOT worth eating! (Just in my experience tho of course..)

    In my experience, when I get frustrated I go shopping and see all the different options that there are for me TO eat. (tho sometimes this can make it even more depressing... <_< )


  6. My family is going to Gatlinburg & Pigeon Forge in July & we were wondering if anyone has any suggestions about where to eat or has had any experiences being gluten free on vacation there. Thanks!

    Hey, I started a topic about this in the travel section I think. I just went here in Easter. We stayed in a cabin with a kitchen, which was really nice and something I'd recommend. (I did notice a lot of hotels- some as cheap as $20/nnight advertising a microwave and fridge in-room which would also help.) We found a really good place- Bennet's BBQ- they had a really good, and pretty cheap, breakfast buffet (TONS of fresh fruit). There are the chains, like outback and olive garden which ive heard have gluten free menus. There also seems to be locally owned restaurants, that would probably be very willing to accomodate you. Dixie Stampede is fun, and if you call they can tell you what contains gluten (i havent eaten here since going gluten free tho). A few problems I did notice- In dollywood we went to a bufffet, and EVERYTHING seemed to contain gluten. The kettle korn there seems like it would be gluten free (they have the ingredients on the bucket, and they make it right in front of you). Another potential problem- the old Mill restuarant (i didnt eat here gluten free, but i remember when i went here a few years ago that the meal was quite flour heavy- which makes sense since they grind their flour on site i believe). They might be able to accomodate you, I'm not sure. Im not sure if you have been to the area before, but there are a TON of restaurants so you are bound to find something. Let me know if you need more help.


  7. I got diagnosed about 4 years ago with Celiac Sprue. Joined Celiac Association in Omaha, Nebraska. I am still learning, I try to be careful of things I eat. But I always had a flat tummy and all but I now get so bloated under my breast area, it's so uncomfortable, plus in about 5 years I put on about 25 pounds. I am only 5'3 so it feels like more.

    My gastro doctor wants me to have another CT Scan pelvicc dye and all, I get panic attacks when I have that done now..So it's hard for me and very expensive....Have any of you had any other tests that may help? Where my stomach meets the intestinonal area there is a vert tender area, it comes and goes but my doc wants to see what's going on?

    Again I try to be careful but realize that sometimes the tinest thing can trigger reactions in my body. If you have any suggestions for me please write! Thanks so much..............xo

    I agree with paying attention to possible other intollerances, especially to dairy since a lot of people with celiacs seem to have that problem. Do you use a lot of gluten free subsitututes, like bread and muffins and such? A lot of them seem to be pretty high in calories and low in fiber, which can lead to eating more. I struggle with bloating too, and am trying to figure out what its from as well. Good luck!


  8. I'm sick. Really sick. My husband has never seen me with a fever. In 8 years. And I've been running about 102 for 3 days. I usually get a LOWER temperature with illness.

    What happened? Well, it's a virus. But I've also been trying to get proper testing for celiac.

    Sooo, over Easter, I stuffed wheat into my body to try and register on the blood tests. By Easter Monday, I was an itchy wheezy mess and I needed Benadryl to function. My IgA was 19 and my TT was 5. Grrrh. Not even close to celiac ranges.

    Then I got sick. So I stopped eating wheat. And got a lot better. After 2 days of total gluten-free, I started to recover peripheral nerve function and circulation in my hands and feet. It was awesome. And affirming.

    Then I went to the GI dept. They were nice. But they wanted me back on wheat for the biopsy and they didn't think it likely that I had celiac. The official stats are something like 5% of celiacs testing low on the TT test.

    Mind you, my grandmother died of celiac-associated small bowel cancer and had cardinal symptoms. My father had delayed puberty and, recently, GI symptoms that wouldn't go away until he ate only rice and potatoes. I've got the family neuropathy, badly mineralized teeth, skin contact rashes from wheat, exhaustion, low immune function, allergic asthma, etc. But none of us are "typical" celiacs. We're not skinny. We don't have the diarrhea. And now it looks like we might not show up on tests.

    So I went back on wheat last Wednesday for the biopsy. I never thought I would be forcing myself to eat cupcakes. But I had trouble making myself eat wheat everyday.

    By Friday, I couldn't breathe and I started running a temp of 102. And I've been sick as a dog ever since. The last wheat I ate was Saturday. It made my fever spike. And my airways hurt. Now I'm slowing feeling normal. After antiobiotics and three days of fevers. Blech.

    So I'm mad. So mad. No one listens to the different family issues. The doctors don't care about the neuropathy. They say it's all "unconnected." Raynauds, persistent GI issues, verifiable deaths, schizotypal disorders and depression, bad teeth, delayed growth, an Irish great-great-grandmother who seems to have been the first one with the problems.

    Probably the lowest moment was when I had a specialist nutritionist who's a coordinator at the celiac center here tell me I *wasn't* celiac based on blood work alone. After looking at a detailed family history. Then again, she didn't seem to recognize the significance of adenocarcinoma of the jejunum...

    Is there is a club for people who have something that looks and acts exactly like celiac but isn't clinically verifiable as celiac? I've been trying to collaborate with the medical establishment, for the sake of family documentation and also for my own sense of thoroughness, but I can't stay on wheat long enough to take the damn tests anymore. At least I've satisfied my own conscience and I know what the problem is.

    But grrrh! Arghh!

    (end of rant)

    Wow sorry for all of the frustration you are going through. Even though I seem to have a lot of problem with gluten and other things connected to it, I tested negative for it on the blood test too (tho i stopped eating gluten) Once it came back I figured that the doctors know best, so i went back to eating gluten and feeling like crap. I finally came back to the gluten free diet a few months ago, and finally started feeling better. But since I tested negative, as soon as i start feeling better i kept "testing" myself..and gettin REALLY sick. Finally I just realized that if it makes me sick, theres no point in eating it. Sometiimes you just have to do whats right for your body, and doctors cant always tell you what that is. It seems like doctors are extrememly behind in dealing with celiacs and gluten intollerance.


  9. I'm 17 years old (male in UK) and for the past few years have been suffering from a huge array of problems - tiredness, prostatitis, muscle pain, lack of energy, constipation/ bloating, skin problems, depression and probably more I can't think of right now. I have a stupid amount of food sensitivities. Basically everything I eat, I get some sort of a reaction to - usually in the form of strange muscle pains, burning skin or just a generally weird feeling. If I eat fruit I get INSTANT, fairly severe muscle pains in all kinds of places. I get the same reaction (to a far lesser extent) with raw vegetables. If I meat (of virtually any kind) I usually get mild muscle pains/ cramps (hard to describe), and burning skin. I get similar reactions to virtually all grains (burning/ tingling skin) , eggs, nuts/seeds, onions etc etc. It feels like I've developed a, virtually instant, reaction to virtually every food - each food gives it's own unique reaction, almost indescribable really.

    I've had certain symptoms for as long as I can remember, but it started to get worse about 2/3 years ago. I've been dismissed by many a doctor as a "hypochondriac", but then I started to research about "alternative" health, candida/ leaky gut etc. I originally attributed my symptoms to Candida, but I learned that this is in itself a symptom, and the "feeding the yeast" stuff seemed a little illogical. I know I have leaky gut, evident by the fact that I have so many symptoms and am allergic (or at least slightly sensitive ?) to just about everything. I've learned that this can be caused by gluten intolerance, or maybe other intolerances, amongst other things. I've cut out gluten, dairy, refined sugar, all processed food, most grains (bar rice and potatoes which I think both bother me), and other things. I live off meat, frozen veg, raw eggs and fruit. I've been this way (with the odd, rare "cheat") for at least a year, probably longer, but I still feel like crap, poor digestion, painful prostatitis, tiredness, muscle pain etc. Where do I go from here? I feel I may need to cut out all grains and fruit, which would leave me on meat, veg and eggs. I don't have access to any testing/ specialist clinics etc (for now) - what do you suggest ?

    Wow, Im sorry to hear about your situation! Im still very new to all of this, and Im not sure what to suggest but I hope you feel better. Are you sure theres no cross contaimination issues? Does eggs seem to give you problems- I know those are one of the top allergens. Hope someone has some help for you. Have you seen any doctors abotu these problems?


  10. Let me know how it goes!

    I'm going to Gatlinburg the end of June and would appreciate any thing you find.

    Debbie

    The vacation went good- I love the area. There are a LOT of places to eat at (i mean TONS of restaurants, all down the main street). Im pretty sure they even have outback and olive garden (which have gluten free menus I've heard?). They have a lot of barbeguq type places, which I find easier to eat at. They have a lot of chain stores, but also some smaller ones that would probably be accomodating. I stayed in a cabin with a kitchen (I really recommend this, and its a lot of fun ahving your own cabin), so that did help with some meals but I also ate out. Dixie Stampede is a cool show, and if you call them they can tell you which food has gluten in it (I didn't eat there since going gluten free, so I can't give experiences. I did however call them, and they had a list to read off). The one problem I had was at a buffet in Dollywood- almost EVERYTHING had gluten in it. They do make kettle korn in the park (which is SO good and SO addicting) right in front of you, and the ingredients on the bucket say popcorn, vegetable oil, salt, and sugar, and the popcorn is made in a separate booth so I think it would be quite safe. The old mill is a landmark there, but the make there own flour and the meal is quite gluten loaded. We had breakfast here on my last (non gluten free) visit, but I don't know how accomodating they are on a gluten free diet. One of the best palces we found was bennet's bbq that was right behind ober gaitlinburg (a block off the mainstreet, almost towards the last light as you enter the smokey mountains.) We went there for breakfast, and their breakfast bar was VERY good (LOTS of fruit) and pretty cheap. There is also a bennet's in pigeon forge. Lemme know if you need more help, and I hope you enjoy the trip.


  11. First, let me introduce myself. My name is Melisa. I am a classically trained chef and am currently studying to become a registered dietician. I am in the process of being tested for celiac, but regardless of the results will be implementing a gluten-free lifestyle immediately following all testing. I am married and have two daughters, ages 3 and 5.

    I was wondering if anyone would be interested in me posting daily/weekly gluten-free meal plans, including shopping lists and recipes? Although every recipe would not work for all celiacs, taking into consideration the wide range of other food allergies & intolerances, most would work for many.

    If anyone is interested, I would be happy to post them as I create them, I just don't want to waste what little energy I have if nobody is interested.

    Sincerely,

    Melisa

    Personally I would find it interesting. I would think it would really help people who are new to the diet, or people who are starting to get feed up with the diet. I find the different meals that people come up with very interesting.


  12. Anyone know if glee gum is gluten free? I bought it at whole foods or trader joes, i don't see anything suspicious but i figured id just double check...

    Ooops I dont know how to delete that late post but i just found the website....

    Glee Gum is made with all natural ingredients including: pure cane sugar, rice syrup, natural flavorings and colorings. Our gum base has super chewy natural chicle harvested from Sapodilla trees in the rain forests of Central America.

    Glee Gum is: Vegetarian, Additive Free, Lactose Free, Dairy Free, Wheat Free, Gluten Free, Casein Free, Egg Free, Yeast Free, Nut Free, Soy Free, and Peanut Free.


  13. Hey I feel your pain- I had to go to the ER for the same thing a few weeks ago (I was in so much pain my mom thought my appendix was rupturing, it ended up being I was full of stools even though I had being going a few times a day. They gave me stool softeners but it didnt really help..but the morphine helped the pain when I was in there :rolleyes: ) Im also going through finals this week and am feeling ill. I hope you feel better and good luck on your finals!


  14. They have so many restuarants in the area that your bond to find one that can serve you. I called dixie stampede too, and almost everything had soy or gluten in it. We didn't go because we didnt have enough time and have already been (but it is a great show), but at least they were knowledgable. The only problem i had was a buffet in dollywood- almsot EVERYTHING seemed to be gluten FILLED <_<


  15. I eat that or their cashew butter practically every day and have had no issues. Yogurt on the other hand... last time I had a half of a container (the small one, not the large!) and had issues for 4 days.

    Thanks for your reply. I think the almond butter is safe, because ive been eating it for a few weeks and don't have problems with it every time (and its a good thing because that stuff is goood :D ) Dairy on the other hand..I'm really starting to question. I thought it was good for your stomach, especially yogurt with the probiotics, but my stomach keeps swelling out after I eat it. I guess I'll have to pay more attention, and maybe see how I feel without it...


  16. I noticed a lot of people seem to have additional intollerances or allergies besides gluten. Im still feeling ill after I eat some days, and I think it might either be because of soy or dairy. I was wondering..What other intollerances do you have and how do you deal with m ultiple intollerances? Which was the worst to give up for you(gluten, dairy, soy, eggs...)?


  17. I've gone to Disneyworld dozens of times (my brother works for them), and am going in 3 weeks. Im nervous because this is my first time going since having to be gluten free. I've heard great reviews of how accomodating they are, and I called them today and wow! The lady was really helpful and knowledable (she even mentioned cross contaimination issues) and she sent me an email with a lot of helpful stuff. If anyone needs the number or is interested in their response, let me know. Ill report back on how the vacation goes in a few weeks! :)


  18. I noticed this as well in the soup aisle at the Whole Foods in Madison, NJ. I think the problem is that they are marking the spot on the shelf as oppossed to marking the actual product. Items could be moved or stocked incorrectly. Just proves we still have to read the labels.

    It is good that stores are realizing our gluten-free needs but they have to do a better job. I think it would be best if they marked the actual product like Wegmans does.

    Yeah these were marked on the shelf, not the actual product (they weren't a whole foods brand, I think they were Hain's or something with an H? I'd have to double check). Would you mention it to a manager or something? I would feel awful if a person who was really new to this thought that they were okay since whole foods labeled them this way.


  19. So last time I was looking for rice cakes at my local whole foods, i saw some mini rice cakes (cant remember the name now..) that underneath whole foods had marked as gluten free. I picked it up to check for the ingredients (since i also seem to have problems with soy)..and it had malted barley as one of the ingredients. Im pretty new to all this..but doesnt barley have gluten in it?