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tiredofdoctors!!!

Just Had Appt With Dietician

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I just had an appointment with a registered dietician. She gave me samples of products which have just come out -- she got them at a convention -- she studied under Shelly Case, the author of "The Gluten-Free Diet" -- it was a really good session. She gave me lots of material, went over it with me & my husband -- spent two hours doing so, She also gave me tons of websites, including downloadables which have just undergone updating (pages & pages) for gluten-free foods. We went over a food plan, she had a personalized dietary plan for me which was all-inclusive, it was a really good session. She wants me to see the endocrinologist earlier than planned, then follow-up in one month with her. In the meantime, she wants me to fax to her my daily intakes, the recipe I use for my smoothies, the info on my protein powder, and she is going to look into other things that I'm eating now for possible alternatives / variations. I was surprised that it went so well. She attends every celiac support group meeting, lectures extensively to groups, including MD's. If you can find someone like that in your area, I would highly recommend an appointment. It was $75, probably NOT covered by insurance, but well-worth the money.

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I just had an appointment with a registered dietician. She also gave me tons of websites, including downloadables which have just undergone updating (pages & pages) for gluten-free foods.

I'm glad your appointment went so well. How about sharing those websites :rolleyes:

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Have been going through mountains of paperwork :( -- will post all websites on this thread -- she even gave me the website that publishes the criteria for registered dieticians. Will post all tomorrow.

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Oh thanks for taking the time to post your new info Lynne! I found a dietician who may know more about the gluten free diet than me but if she doesn't, at least she used to be a chef so part of her service is giving me gluten free menu ideas. She can't see me until March 4th though as she works part time since she had her second baby. None of the other so-called Celiac dieticians I found in town know much of anything about gluten anyway.

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Lynne-

Congrats to you! Glad you found someone trustworthy...

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Lynne

I'm so happy for you

Some good positive news for you...for a change :)

Judy In Philly

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Have been going through mountains of paperwork :( -- will post all websites on this thread -- she even gave me the website that publishes the criteria for registered dieticians. Will post all tomorrow.

just wondering if you will be able to post that info here soon?

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Sorry about not getting the things out sooner . . . . just got more bad news two days ago :( , and have had to call ALL MD's -- neuro, rheumatologist, ear,nose,throat . . . it's a mess. Trying to figure out what's the best way to attack the current problem without having to compromise the ability to diagnose the new one. Have also made call(s) over and over to the insurance company . . . will be home tomorrow afternoon -- will post then. In the meantime, if you're the praying type, I would really appreciate it. Can't believe that I have ANOTHER autoimmune disease. This is getting rediculous. Thanks . . . Lynne

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Sorry about not getting the things out sooner . . . . just got more bad news two days ago :( , and have had to call ALL MD's -- neuro, rheumatologist, ear,nose,throat . . . it's a mess. Trying to figure out what's the best way to attack the current problem without having to compromise the ability to diagnose the new one. Have also made call(s) over and over to the insurance company . . . will be home tomorrow afternoon -- will post then. In the meantime, if you're the praying type, I would really appreciate it. Can't believe that I have ANOTHER autoimmune disease. This is getting rediculous. Thanks . . . Lynne

Lynne

I'm so very sorry.

I can't believe what all is happening to you

your day sounds like mine last week.

Tomorrow is another day.. and i'll start prayers for your right now

judy in philly :(

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Wow! You found a one in a million dietician....the first one I saw knew less about celiac disease than I did and I had just been diagnosed and had only had the web to tell me about it. I did see another dietician in Sept. because I was gaining weight and I am also diabetic. She was helpful but I still find it really hard to combine the two diets. My doctor tells me I just need to eat less to lose weight but I think that there is something about being a celiac and a diabetic that makes weight loss more difficult. If I eat all the food required on a diabetic diet I gain weight....if I eat less, my blood sugars go crazy and I feel sick from that. It is really frustrating. I wish that there was an easy way to keep my blood sugars in line, lose weight, and still be gluten-free.

I just read through the posts after your first one and feel pretty stupid complaining about being a diabetic. I hope that there will be things that you will be able to do about your new diagnosis. I had all sorts of problems before the celiac disease diagnosis and once i became gluten-free a lot of those other symptoms lessened. I really think that celiac disease affects more than the docs are aware of and that it is just the tip of the iceberg in diagnosing other problems. I really think that the autoimmune diseases are related in origin. I have had migraines, depression, diagnosis of fibromialgia, joint aches, colon cancer, diabetis, intestinal problems, hyatial (sp way off) hernia, to mention a few, and I know that all were related to the celiac disease....even if docs don't agree.

Good luck....my prayers are with you.

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Lynne - I'll keep you in my prayers for sure. I'm so sorry to hear of even more bad things happening to you. You must be such a strong person to get through this and you are an inspiration to me. What a brave person to deal with what's been handed you and still you think of reaching out to help others. Thank you for your unending kindness.

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Hi,

I'm looking for a nutritionist just like the one that you described in my area. I live in Chicago/Evanston IL.

Thanks!

Shea

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Guest Robbin

Lynne, I am so sorry you are going through so much. You have really helped me with your insightfulness and humor. I will be praying for you. :)

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Lynne, I am so sorry that things are not going well. You are in my prayers. Thank you for being such support to everyone here and a wonderful role model. Your strength is something I need to strive for. {{{{{{BIG BIG HUGS}}}}}}}

Armetta

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Thanks for your prayers, your hugs, and your compliments -- I sometimes have a hard time believing I deserve them, though. I think I'm just on the same journey we all are, and just have a few bumps in the road here and there. I have to tell you, though, I have a GREAT support system. My husband is amazing -- I couldn't have asked for any better. My family is supportive -- a bit pushy with regard to trying to get more answers -- they can't accept that I may not walk independently again. I think that, sometimes is the hardest thing for me to deal with. Between my mother and my sister telling me that I AM going to walk again, and my dad tearing up every time he sees me, it gets kind of rough. My son is doing very well with all of this, and my daughter, particularly being 19 and a little immature, resents the living daylights out of me. That being said, enough of my pity party . . . .

The dietician I saw gave me some GREAT advice. I have tried to sort it out -- I took copious notes -- so if this is a little dis-jointed, it's because a lot of it is coming from my notes, as well.

1. The Celiac Sprue Association has published its 10th edition of its gluten-free product listing, updated October of 2005. It is a binder, and awfully bulky, but had a wealth of information within it. Dave and I were surprised at the amount and types of information available in it. It is available through the Association for $18.00. We plan on buying this -- we both felt that it is worth the investment. You can call toll-free at 877-272-4272 to order by phone with a credit card, or there is an order form that you can send with a check. Their address is: CSA P.O. Box 31700 Omaha, NE 6813100700

2. She did recommend subscribing to Gluten-Free Living. The address is: 19A Broadway Hawthorne, NY 10532. The Phone # is 914-741-5420. Their website is http://www.glutenfreeliving.com

3. She also said that she liked Sully's Living Without, but it was also geared toward food allergies as well, unlike Gluten-Free Living, which is solely for gluten-free. This address is P.O. Box 2126 Northbrook, IL 60065 The Phone # is 847-480-8810. The Website is http://www.livingwithout.com

4. The American Dietetic Association has a website which has a searchable database for nutrition-related topics. She recommended browsing as much as I can through there -- it is the governing body for Registered Dieticians. Their website is: http://www.eatright.org

5. She said that each medication which is prescribed should be checked out on this website for its potential to contain gluten -- both name-brand and generic: http://www.glutenfreedrugs.com It lists the medications alphabetically and by therapeutic category.

6. She gave me a brochure which looks pretty yummy! It is from Dietary Specialties -- Gluten free frozen foods & mixes. Their toll-free number is 888-640-2800. Their address is Dietary Specialties 10 Leslie Court Whippany, NJ 07981 Their website is http://www.dietspec.com It does say that there is a minimum of a $75 order for frozen foods. The brochure I have lists English muffins, Pound Cake, Pie Shells, Cheese Cake, Cheese Pizza, Lasagna, Macaroni & Cheese, Ravioletti Primavera, Chicken Nuggets, Fish Sticks, Meat Ravioli, Cheese Ravioli and Stuffede Shells (that was the all-inclusive list)

7. She downloaded the Clan Thompson list. She said that she likes it -- she likes that they have updates every 12 weeks, but that she also felt that the list was limited. It contains only 4,000 products, and many of them are not available in our area, and often are available in Europe only. I told her that the Gluten Guard contains 100,000 items, and it has updates 3 times per year; she said that she felt this may be more appropriate for our neck of the woods!

8. She recommended the gluten-free cookbooks which are authored by Connie Sarros. Every recipe has a nutritional breakdown, and all ingredients hae been approved by the Celiac Sprue Association and by the Gluten Intolerance Group. She has a bunch -- they're online at http://www.gfbooks.homestead.com

9. She said that the best pizza crust she has been informed, is in the cookbook "Gluten-Free 101", by Carol Fenster, PhD. She said that the book "Gluten-Free Gourmet" by Bette Hagman has also been recommended to her, as well. She may have shown copies of both to us during our visit, but there was SOOOO much, and it was a full two-hour session.

10. She said that Kroger Brand Private Selection Brand meats are gluten-free, but only if they are pre-packaged. She said that she did not recommend buying them from the deli, simply because of the risk of cross-contamination. She said that she is one who errs on the side of caution . . . . Kroger's phone # to ask of items are gluten-free is 800-632-6900. The direct line to the Registered Dieticians at Kroger is 866-632-6900

11. She said that a relatively good restaurant guide is the Gluten/Wheat free Guide to Eating Out. It's available at http://www.goodhealthpublishing.com, or write to Good Health Publishing, LLC P.O. Box 889039 Atlanta, GA 30356-1039

12. She said that Kitchen Basic Broth is gluten-free, as are Nut Thins Crackers (that is from my notes)

13. When I told her that I basically subsisted on smoothies, she said that not all yogurts are the same. She questioned whether Dannon's Immune System yogurt was gluten-free, but DID recommend Stonyfield Farms Yogurt. She said that it is gluten-free, and it has more probiotics in it than any other yogurt.

14. She said that, with regard to breads -- make your own! She said that you can hardly purchase shelf-bought breads that match the taste and texture of home-made breads. She recommended either a very sturdy bread machine, or using Kitchen Aid Mixer -- she said that hand-beaters will not hold up to the density of gluten-free bread dough.

15. She gave me samples of Larabars -- I had the Cocoa Mole' and the Chocolate Coconut Chew -- given the sweet tooth that I have, and my preferance for Almond M&M's, you can imagine that I did not find them that fantastic!!!

16. She said that 1-a-day vitamins are gluten free. She also recommended Pioneer vitamins. She said that with regard to Fish Oil, she recommended Nordic brand, because of its decreased mercury amount and because it is readily available in our area. My physician and the pharmacist/homeopathic guy that I buy my vitamins from recommends Eskimo3 brand Fish oil. They do more checks on their product than any other fish oil (according to these guys), and have consistently have less contaminents in their product than any other. I don't know, however, if they are gluten-free.

17. She gave me a catalog of Freeda Vitamins -- here is a parpaphrase from the catalog: "Freeda Vitamins are Born Free! No Aluminum, Artificial colors, Artificial Flavors, Aspartame, Corn, Dextrose, Dyes, Eggs, Fish, Gelatin, Gluten, Lactose, Meat, Milk, Preservatives, Salt, Starch, Sugar, Sulfates, Sulfites, Talk, Wheat, Whey, Yeast." They have a ton of stuff, too! Their contact information is: Freeda Vitamins & Freeda Pharmacy 36 East 41 Street New York, NY 10017. Their Phone # is 800-777-3737 (or 212-685-4980 if you want to pay, I guess) and their website is http://www.freedavitamines.com

I have a couple of other REALLY long lists (as if these weren't long enough), so if you want me to send them to you, feel free to e-mail me at bodyworxinc@hotmail.com

Hope this helps -- take care everyone -- sorry this took me so long. Again, wasn't prepared to have yet another loop thrown at me this week! Talk to you soon . . .. Lynne

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Dear Lynne

I can't believe withall you have going on you 'still find time for others'

You are a role model for me also.

My prayers are continuning and I'm sending your name to two' powerful' prayer chains.

Your time will come...we're all pulling for you.

It's your time to 'receive' now.

hugs :)

Judy

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Thank you so much for taking the time to post all of this useful information. It must have been wonderful to talk to someone that was so well informed. I am finding that even the local doctors know little about celiac disease.

Thanks again and I have said a prayer for you!!

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No problem, guys, happy to share!!! I am surprised that, while Louisville is not considered to be a "hallmark" of medical discoveries (except hand surgery), I have been able to find two neurologists, two gastroenterologists, a rheumatologist and a dietician, all very knowledgeable in Celiac disease. Now, if they could only find a way to restore the parts of my brain & eyes that have been affected, I'll be in nirvana! Meantime, I'm going to watch our recorded favorite shows 24 and The Shield with my hubby and munch on the GLUTEN-FREE (verified) M&M's he brought me! Talk to you guys soon . . . . . Thanks again for the prayers and hugs -- back atcha --we're in this together . . . Love, Lynne

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