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Moondanse

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    kl_breton

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  1. Hi folks -

    I saw an ad for Sinfully Gluten Free this week (they run ads on this site as well) and I ordered a lemon bar, a cherry chocolate brownie, a piece of carrot cake and peanut butter cup cookies.

    I just tried a little of all but the cookies - FANTASTIC! Really, really good. I think that anyone would enjoy these products and go back for more. They are moist and flavorful and the texture is just like our gluten filled favorites.

    Unfortunately I just found out that I have to go on an anti-candida diet, so I had to get in the test before I officially start that diet. When I'm able, I will definitely order from this company again.

    Check em out.... http://www.sinfullygf.com/Home.html

    The shipping was very reasonable. I just ordered Priority Mail shipping and it came in two days and everything was in good order.


  2. I got my results from the doctor on all the other tests I had done. They seem to add some insight:

    Allergies (food only): cheese, egg white, egg yolk, garlic, milk, wheat, food molds (really high)

    All news to me, though I had my suspicions. I've had skin prick allergy testing done, but this was MAST testing and they did the delayed IgG testing, which was more telling.

    Vitamin D deficient and low DHEA

    Absolutely no detectable Lactobacillus bacteria in my gut - not good

    An overgrowth of miscellaneous bacteria


  3. I am just finishing up my lunch & computer time!! But could you post what you are eating?

    Oh geez - here's a high-level look in to things I might eat:

    Envirokidz Amazon Flakes

    Health Valley Rice Crunch Ems

    Bananas (at least one every day)

    Stoneyfield Farm Organic Fat Free Yogurt

    Chicken

    Beef

    Gluten Free Pasta (Glutano Tagliatelle, Biaglut spaghetti, Trader Joe's Brown Rice Pasta)

    Potato (mashed/baked)

    Green Beans (Del Monte)

    Peas (La Seuer)

    Carrots (store brand or fresh)

    Almond Milk

    Vitamin Water

    Water

    Green Tea (Good Earth)

    Tazo Tea (Passion)

    Hard Boiled Eggs

    Gluten Free Bread (Whole Foods)

    Gluten Free English Muffin

    Ben & Jerry's Phish Food

    Nestle Sno Caps

    Rice Chips (Lundberg)

    Shredded Cheese - brand varies, but I only buy bags that have allergen statements and identify ingredients


  4. I am 32 years old and I was officially diagnosed with Celiac Disease in January '07 through blood tests and biopsy.

    I have done really well following the gluten-free diet - I check all my labels, I've changed my hair products and cosmetics, I call pharmaceutical companies to check my meds, etc.

    I have had ongoing health issues that have had me in and out of the doctor's office this last year though. In addition, I lost about 25 pounds starting about 9 months in to the gluten free diet - they have not been able to determine why. My gut is in a far worse state now than it was over a year ago. It's tender to the touch, constantly bloated and never at rest (gurgly). I do not, however, have any diarrhea. (which is different from pre-Celiac diagnosis).

    I'm working with a new holistic doctor who has run a whole host of new/different labs, including a speciment test through Genova Diagnostics that checks for yeast/bacteria/overall gut 'environment'. I'm seeing her today for those results, which I am anxious to get.

    I also just had my first colonoscopy and a follow-up endoscopy done because of the ongoing issues.

    The colonoscopy was clean. My pathology report on the biopsies came back stating:

    celiac disease 3 antibody demonstrates a focal increase in intraepithelial T lymphocytes supporting a diagnosis of celiac disease. Serologic correlation is warranted. Appearances suggest early disease or possible incomplete response to a gluten free diet.

    The note from my doctor recommends seeing a nutritionist to review my diet as he feels that I'm still ingesting gluten.

    I have a very, very difficult time seeing how that is possible with all of the care that I take on this diet. Not to mention the fact that I have no diarrhea - which has been the indicator for me when there was contamination (the time between blood tests and biopsy when they made me eat gluten and once contaminated by a medication).

    Here's my question:

    Could the appearance of the biopsies suggest late healing, rather than early disease? Can they differentiate between something that is trying to heal vs something that is just recently damaged??

    If they can make that differentitation, then I will have to accept that I am somehow ingesting gluten. But, I just don't want to over-react and cut things out of my diet again if it is not necessary.

    I know that adults don't heal as quickly as children and I would assume that my healing process would probably be a bit slower given the fact that I've been dealing with other medical issues too. So, I wouldn't find it hard to believe that my intestine is not totally healed. What the report doesn't state is whether or not the damage they saw was new damage or old damage or if they can even tell.

    I hope that I've made some sort of sense here as I've been rambling. I'm trying to write this quickly since I am at work.

    Any insight you might have would be much appreciated.

    thank you,

    Kelli


  5. I'm just curious - I went out to the Nature Valley website and could not find these granola bars? The only nut granola bars that they have contain oats and none have such a simplified ingredient list. Are they specially made for Sam's Club?

    Follow-up -- I found them elsewhere and they seem to be just nuts held together by a sugary syrup. They should be tasty - I've tried gluten-free variations like this from other manufacturers. I'm not sure why Nature Valley doesn't have them on their website. Hmmmm....


  6. Moondanse-

    I personally feel it isn't the pharmacy's responsibility to call the companies for us and find out the gluten free status. As you have found, it takes time, time that those people don't have. Also, I am not a person who likes to get 2nd hand information. I would rather call the company myself and speak with them myself. That way I am the one hearing exactly what is being said. I can then ask any questions I may have about what they said. I can ask about shared production lines etc.

    When I call I usually ask for a pharmacist or chemist at the company. Sometimes you DO get the voicemail, leave a message, but then go ahead and call them again later if they don't return the call.

    Most of the companies aren't going to "certify" it is gluten free. That is just asking for someone to sue them. They usually say something like "we don't add any gluten ingredents to ______"

    All I can tell you is that you have to keep making those calls. You are doing the right thing by trying to figure out what meds are safe for you!! Hang in there......:)

    -Jessica :rolleyes:

    Jessica, you are right. I really was just venting. I had a terrible day and I'm aggravated with myself, and in general, that my nasal spray made me sick. Everything I eat seems to be aggravating my symptoms even more.

    The long and short of it is I just want to feel better. I don't understand people who cheat, it's just not worth all of this. I've been recovering for a full week now and it still isn't out of my system. It's just bothering me even more than usual that we have such obstacles in front of us with regard to everything and anything we put on or in our body. I have faith that one of these days everything will be labled so people with Celiac will not have to jump through hoops to function.

    In the meantime, thanks for allowing me to vent :P


  7. I've been making phone calls to the different pharmaceutical companies since I got sick from my nasal spray.

    I'm getting frustrated with the difficulty involved in determining if a medication is safe. It really is absolutely absurd that we have to do this. If you call the pharmacy, or mine at least, you are told that unless it's marked gluten-free they can't help you out. Give me a break. There has got to be a better way. I can't go by the lists out there, because they listed my nasal spray (Nasonex) as safe and it was not.

    So, I'd like to know what your thoughts are about Allegra, Allegra-D and generic fexofenadine 180? I called Sanofi-Aventis and they said that they cannot certify that it is gluten free due to cross contamination issues. They said that the starch that they use is corn and that it is subject to change. However, the man I spoke with said that he has not known it to change. I use one of the variations of this product every day. So far, I really haven't noticed any problems though.

    I'm just paranoid right now. I've been sick for well over a week, so I'm starting to get concerned that something else is causing the problem. It's probably more likely that my system is having a tough time recovering. I used the nasal spray for ten days before I determined that it was the culprit. But, enough is enough. My stomach is so sick and I look like I'm four months pregnant. I hate this. I'm feeling for frustrated, angry, sad, tired, etc, etc, etc.

    I tried to find out about Trazadone and Watson Pharma told me that they cannot certify it as gluten-free. Then the guy said there were no starches listed in the ingredient list.

    I have a whole medicine cabinet full of things. I had a really tough time trying to even get in contact with the pharmaceutical company for Hyoscyamine, which a lot of us use. The company listed on my bottle is Amide, but they've been acquired by another company. It took me about 45 minutes to even figure that out. Then I got dumped in to a voicemail. ARGH!!!

    Who knows. If any of you know anything about any of these drugs, please let me know.

    Thank you for letting me vent.

    Kelli


  8. Rafferty's Restaurant & Pub:

    Just wanted to let anyone who is interested know that I ate at Rafferty's in North Conway when I was in New Hampshire. They have a fantastic menu. Their daughter was diagnosed with Celiac right about the time they were opening their restaurant. Since then they have been committed to provided a 'safe' place for people with restrictions to eat. They have gluten free bread, pasta, pizza, fried foods (dedicated fryer), you name it. I e-mailed them when I got home to thank them and to ask them about their bread. They were wonderful in their response. If you can check them out, you should. I wish there were more places like this in my area. Thank you Rafferty family!

    http://raffspub.com/


  9. Do you use the milk-free egg-free Biaglut?? Their website lists "pasta" and also "milk free, egg free products" The pasta is listed as wheat, milk, and egg free anyway, so I was wondering if they actually have two different types or if they just listed it that way to call attention!! Thanks!

    There aren't two kinds at the store, just the one. I just checked my bag though and it say's right on the front without milk or eggs (it's in Italian) and I checked the ingredients and there are none. So, yes, I use the milk free, egg free (gluten free) Biaglut. I definitey recommend it if you can get it.


  10. When I was first diagnosed, my doctor left me a voicemail regarding the diet that said "You are a smart woman, I'm certain you will figure it out". That was it. I got a letter in the mail with a business card for a local nutritionist (who also stunk). When I asked about testing for vitamin deficiency I was told it wasn't necessary and to take calcium. So, I never went in for my 3 month follow-up because he didn't impress me.

    It's been six months now and I decided I'd give him the benefit of the doubt and go one more time. Though my visit with him was a waste of time and a co-pay, he did agree to do all the blood tests that I requested. I was happy about that. He also said he was going to run a Prometheus Celiac Plus panel. When I looked it up it said that it tests for genetic factors as well as the usual serological tests. I'm anxious to get the results back. Is anyone familiar with this panel? I don't know why he's doing this test now and why he didn't do this test initially, but I'm happy he decided to do it today.


  11. Hi guys!

    When I was first diagnosed and saw the cost to access the electronic lists of gluten-free products I laughed. I thought I could do the work myself (which I can). But, as I continue on with this diet and hit obstacles or forget what is okay when I'm grocery shopping, I'm reconsidering.

    I was thinking that it might not be a bad idea to subscribe to a PDA list. That way I can carry a PDA with me and have access to the list wherever I may be. This might help when at a friend's and I am uncertain if I can eat a specific product.

    So, I'd love some feedback on these lists and which ones are worth the expense. Is it worth the cost and will it help?

    Thanks,

    Kelli

    Thanks for all the feedback folks -- I'm still split down the middle. I'll have to think on it a little longer. I can't help but think that it would be beneficial to have a list on the PDA when in a jam. Like today, I was traveling and the chef at a restaurant wanted to know if I had an issue with Lawry's seasoning -- I don't use Lawry's, so I didn't know. If I could pull out a PDA and check, it would be great. We'll see. Thanks again!


  12. Kelli-

    I spoke to Sherring today. I got the same basic answer you did (as I expected), that they couldn't guarentee gluten-free. The man I spoke with said it was because their suppliers changed and they couldn't guarentee what they were getting from those sources. He read me the list of ingredients and their sources. From what he said, it sounded like the citric acid (corn) and the sodium citrate (cornstarch) might be the problem ones.

    His main line was it was up to me and my doctor to decide if Nasonex was ok. Nothing against the people I talked to, but it makes me angry that a drug company can't tell us directly what's in its product!! They should know. The FDA shouldn't allow these kind of sheningans, especially dealing with such a major allergen! Not a new complain, I know, but grrrr.

    With another med. I ran into the issue with starch and "we can't guarentee" since the supplier might switch to wheat starch if it was cheaper that month.

    I talked to my md and she's having me discontinue; we're going to try no nasal spray as my allergies have been much better gluten-free and see how it goes. (a little scary) Well, I hope this will improve my celiac disease, getting it out of my system!

    -grey

    Grey,

    Thanks for the update. I'm glad that I posted on here about it. It's very frustrating, I agree. I'm still dealing with the effects of using it for only about 10 days. I had a wedding over the weekend and I looked like I was three months pregnant from the bloating. Lovely! I have my first follow-up appointment on Tuesday to have blood tests done again and I'm certain this will mess up all the work I've done over the past six months. Oh well. I'm just relieved that I figured out the problem and quickly enough. I hope that you do okay off of nasal spray. If not, Nasacort AQ is okay for us to use. Astelin is also, but it's non-steroidal. I believe it's an antihistamine nasal spray. I actually notice results with the Astelin almost immediately. Good luck!!


  13. Hi All,

    I looked through 27 pages of postings and couldn't find any that talked about pasta. I made a pasta casserole last night with some gluten free elbow noodles. This was a Bette Hagman recipe, and I followed the directions. I cooked the pasta as directed on the box, and it tasted quite good. I then assembled the dish and baked it per the instructions. Well when the dish was done, the noodles were just a big blob. I think if I were to make it again, I would cut the cook time of the pasta in half even though the pasta wouldn't be done.

    But do any of you have a favorite pasta brand? I am new to the gluten free world and still experimenting...

    Any help would be appreciated.

    Stephanie

    I bought Tinkyada when I was first diagnosed and was pretty pleased. Then I met someone through a support group meeting that highly recommended Biaglut pasta. She comes from a huge Italian family where pasta is a staple. She swore by the Biaglut brand. It's almost $8 a bag, but it's well worth it. I usually mix the Biaglut and the Tinkyada together. If I'm cooking for someone else too, then I use strictly Biaglut. You really cannot tell the difference, it tastes like regular (gluten) pasta.


  14. Oh, crap. I thought Nasonex was ok - I'd seen it on the lists and then I thought the hospital had checked it too. Why do the companies make it so hard?

    I tried calling Scherring but it's too late today. I wondered if they did a we can't confirm or deny thing or whether they said it definately had gluten. Do you know what about it has gluten?

    Thanks for posting!

    grey

    Grey-

    The woman that I spoke to said that they could not classify it as gluten-free as the formula changes frequently and gluten is one of the ingredients in some of the formulations. I'd be interested to learn what they tell you when you call. Please post when you do (if you don't mind).

    Either way, I am not using it anymore. I've been terribly uncomfortable since I started using it and didn't even connect the dots. I knew I hadn't eaten anything to cause it, so I'm left with the Nasonex and her response to my question today. For me, it is all the confirmation that I need.

    ~Kelli


  15. Ok, I've been trucking along doing the gluten-free thing for six months now. Doing pretty well if I do say so. Hit my first issue of being careless and I'm so aggravated.

    I have severe allergies and have to use a nasal spray every day. A friend gets me samples from the doctor's office where she works. I always use Nasacort AQ and she grabbed Nasonex accidentally. No big deal, I've used it before. WRONG! The past week I've been sick -- not horribly so, but severely bloated and uncomfortable. I read something on the posts that made me question the Nasonex (which I should have done in the first place). I started searching and found it was safe on two lists, but something was bothering me. So, I called Schering -- sure enough it is not gluten-free.

    I also called MedPointe regarding Astelin nasal spray and they confirmed it is gluten-free. And I called Sanofi Aventis and confirmed that Nasacort AQ is gluten-free. Those are the two that I normally use. I should have known better.

    Anyways, the point was not to call myself out but to share with all of you that Nasonex is not gluten-free and that the other two are safe.

    Thanks,

    Kelli


  16. Hi guys!

    When I was first diagnosed and saw the cost to access the electronic lists of gluten-free products I laughed. I thought I could do the work myself (which I can). But, as I continue on with this diet and hit obstacles or forget what is okay when I'm grocery shopping, I'm reconsidering.

    I was thinking that it might not be a bad idea to subscribe to a PDA list. That way I can carry a PDA with me and have access to the list wherever I may be. This might help when at a friend's and I am uncertain if I can eat a specific product.

    So, I'd love some feedback on these lists and which ones are worth the expense. Is it worth the cost and will it help?

    Thanks,

    Kelli


  17. where do you live? The cheapest place to find there products is Greenfields market in Greenfield Mass. The products are only 5.99 instead of 7 dollars or more at other places. I heard the bakery will sell the stuff just as expensive as the stores. If you come here go to the Brattleboro Food Co-op. Their sit in eatery has all food labeled gluten free or not. They also sell a new gluten free bread made in town called Walk On water. It is really good. I can't eat it though because it is made with white rice which bothers me.

    I live in Western Mass -- I don't think Greenfield is too far. I'll have to check it out. The baguettes were almost $8 and the rolls were about $6 at Whole Foods. I was okay spending that because I'm not a huge bread eater. But, if I can get other things in Greenfield, it is probably worth the drive. Thank you for the tip :-)


  18. Depending on which side of the lake you will be on, you might want to drive up to N. Conway and eat at Rafferty's. I posted a thread around June 24th or so about the place -- it's on Kearsage, across from the train station. Their daughter is celiac, and the menu is unbelievable. We drove an hour to have lunch, and after driving around Crawford Notch, went back for dinner.

    I'm not sure either, but I will let my boyfriend know and we'll figure it out. Thank you so much!!


  19. We like the Gluteno cereals, especially the Honey Nut. We also buy the Whole Foods frozen gluten free muffins (all varieties are delicious) and the Van's Gluten Free waffles-- with flax or with blueberries. Even my non-celiac children love them. It saves some time in the morning, and the muffins are better than any I've been able to make!

    Whole Foods bakery does Gluten-free muffins also?? I haven't seen them. I'm assuming they are in the freezer section. Where?

    I bought a loaf of their sandwich bread and like it and it's affordable. I'd definitely get their muffins. What kinds do they carry?


  20. It's been a while since I've popped in to share or had time to read what's been happening. Life gets so busy sometimes!

    Last week I was able to attend our local support group meeting and afterwards we had a couple folks sharing their gluten-free wares. I had to share my discovery. One company really stood out -- the folks from Against the Grain Gourmet (www.againstthegraingourmet.com/index.htm) were there with a few of their products. They have developed gluten-free rolls, baguettes, bagels, pizza crusts and pizza. I was able to try the baguettes and rolls and was impressed. It was the first time I'd tried a roll or french bread that was any where similar to the wheat counterpart. They are light and airy like rolls and french bread should be. I bought two baguettes and a bag of rolls over the weekend at Whole Foods (freezer section). I brought a roll to a cookout Saturday and tested it with a hamburger. It was fantastic! I was so happy! The juice from the burger didn't cause the bread to become immediately soggy. It held up and it tasted really good.

    These products aren't available everywhere yet. They are predominantly available in New England, but they have plans to expand their distribution this year. If you live in an area where you can purchase their products, I recommend checking them out. I was really thrilled that they were at our meeting to share their products. I'm grateful to the folks that have a gift when it comes to cooking and baking and have taken the time to create these wonderful products to share with us.


  21. Hi guys -

    I'm going to a wedding this weekend at Lake Winnipesaukee in New Hampshire. We were able to speak with the chef catering the wedding and he is going to work with me on making sure my meal at the wedding is gluten-free. But, I thought I'd check-in to see if anyone knows of any restaurants in or around the lake/Mt Washington area that will cater to our diet?? I've tried searching the boards and found nothing. So, I'll probably have to wing it and hope for the best. If you can provide any help (which you always do), I'd really appreciate it.

    Thanks,

    Kelli


  22. Hi guys-

    One of my favorite snacks right now is Pirate's Booty w/caramel. On their website, I see that there is also a Cocoa Booty and a Fruity Booty. Has anyone tried either of those flavors? It looks like I can only purchase them by the case and I'd hate to buy a case of something that is really icky. I wish I could just buy a bag of each to figure out if I like them first.

    If anyone has any other suggestions for snacks that are similar to these, please let me know.

    Thanks,

    Kelli


  23. We had our first ever block party for our street on Sat. and everyone gathered in the cul-de-sac in front of our house. I knew I would not be able to eat anything anyone brought because I would not be able to check the labels, blah, blah. So I take apple spice/walnut mini muffins with cream cheese coconut frosting. I had to stop my DH from eating them all before we took them outside but he's used to eating almost totally gluten free himself. Well the muffins were a huge hit, not only with the adults in the group but with the kids as well. They wanted to know where I got them......lol! I told them I baked them and they looked shocked - guess theirs moms aren't big bakers. I was the only person to bring homemade baked goods. Anyway, eventually some people got around to asking questions about why I wasn't eating the other stuff and Celiac and gluten came up and I was able to educate a few people but many of them knew someone with Celiac. It was pretty cool so if you get a chance to talk about gluten and Celiac I think you could help someone without even knowing at the time.

    Congratulations! It always feels good when non-Celiac's enjoy anything you've made that is gluten-free. I'd love the recipe for your muffins/frosting if you care to share it. They sound yummy!


  24. The Capital Grille

    201 N. Tyson Street

    Caraba's Italian Grille

    1520 South Blvd.

    OutBack

    1050 Chancellor Park Dr.

    1412 East Blvd.

    8338 Pineville-Matthews Road

    P. F. Chang's

    6809 Phillips Ct.

    Pei Wei Asian Diner

    13855 Conlan Circle

    Enjoy!

    Capital Grille does gluten-free??? I'm heading down to Charlotte in two weeks. I completely forgot there is a PF Changs down there -- I can finally have some chinese food :-)