tiredofdoctors

Actually, they JUST sent me Dove deodorant -- I got it in the mail yesterday. Can you believe that????????

According to the Pharmacist, Lyrica is similar to Neurontin, but it has a mechanism that is supposed to work better/easier/longer in the body. The neurologist gave it to me because I was having so much nerve pain. He had referred me BACK to my rheumatologist. The rheumy was poking around on my muscles -- I kept telling him, you have to poke harder than that. Finally, I told him that it didn't hurt to be pushed on -- but when I moved (gave example of) my shoulder, the muscles felt like raw hamburger. That's when the rheumatologist said that it wasn't musculoskeletal pain, it was neurological. He sent me BACK to the neurologist, and he gave me the Lyrica. Boy, was the rheumatologist right. I started the Lyrica, and my shoulders and hips haven't hurt NEARLY as badly as they did. It makes you kind of sleepy, but it's worth it!

Brandon -- thank you VERY MUCH for the information. Went to their website and signed up for their weekly ads online. Didn't see where I could put in for gluten-free, but will contact them to see if I can. At any rate, I had no idea that they had so many gluten-free products. Thank you for the information -- you rock! Lynne

Sounds HORRIBLE. Hope you feel better soon . . . . Lynne

I should be so lucky. I struggled with eating difficulties when I was in my late 20's, early 30's. Now, I feel like I'm right back there, because I don't FEEL like eating. The only difference . . . . I am GAINING weight. Boy am I hacked!

If I'm not mistaken, it's either in the Gluten Free Bible, or Gluten-Free Living. Will have to check it out . . . Sorry to scare you . . . . Lynne

Yeah, I got something of the same answer. I wrote back Hi! Thanks for getting back to me!! I wish you wouldn't be so perky when you are talking about something which can ultimately lead to my death. Gluten destroys a portion of my brain, and I wish that your company, being responsible to its consumers, would investigate further whether you buy ingredients from your suppliers which contain gluten. Thank you for your vague and incomplete answer! Hope they got the message . . . I also asked them NOT to add an advertisement for me to purchase yet another one of their products, given that they REALLY don't care much about my health. What can I say, I was in a bad mood . . . . . Lynne

Check what the main ingredients are in some of the things you're eating. I made brownies made with Garfarva flour (Garbanzo beans and farva beans) -- they were delicious. My nephews ate a LOT of them -- and they were up farting all night!

With regard to drug lists, I posted the information from my appointment with the dietician, it's under the "doctors" thread, and it has a drug website listed. I'm taking Lyrica, the "latest, greatest Neurontin". Seems to work really well.

Good luck to you . . . . will keep you in my prayers . . . . . Lynne

I love this forum!!!!! I was telling my husband some of these answers -- his response "It's nice to know that we're not the only strange couple out there." I mean, we cheer when I finally go!

I used to have the IBS/C thing -- that's' why it's so different for me. For the longest time, I used to wish it would just go away . . . THAT falls under the category of careful what you wish for. Now, I think Hmmmmm, was it so bad?????

The neurologist is afraid that is that the nerves to my colon are damaged, and it just doesn't know how to make the muscles to work to push stuff through. Guess I just have to be full of &*#! my whole life, and as food goes in, a little tiny bit might come out!

Thanks for the greatest laugh . . . . .Lynne

My doctor gave me 5-days worth of samples of all the meds out, told me to get back to her with the one that worked the best. I can't remember all that she gave me (there were about 7 or 8), but Zyrtec won hands down. I also take Mucinex if I'm just having some increased sinus congestion -- since guaifenassen (sp?) thins mucous, it helps to let the sinuses drain -- thereby avoiding an infection. (I like taking Zyrtec, though, so that I don't GET congestion!)

Can't remember if Zantac or Prilosec worked better for me. Know that on one list, it says that Nexium contains gluten -- took it for 90 days prior to my dx. Tums doesn't contain gluten, if you need a quick fix. I don't get the mint ones, either -- they're terrible for your stomach. The fruit ones are pretty yummy, actually. (Sad that you get so used to antacids that they start to taste good, huh?)

God, Mother Earth AND our relatives & ancestors (and my husband for kissing me after eating Penn Station Sub) . .. . can you get an award from dead ancestors and make the people who were in the will give it to you?????????

My son's pediatrician (a bazillion years ago) told me that GT was due to allergic rhinitis, and that the pH of the mouth changes because of the post-nasal drip. Don't know if it was true or not, the guy was a jerk . . .. . . . Lynne

That is really good information broken down into a very "reader-friendly" way. Thank you very much. . . . Lynne

I am NOT a doctor, but these are the minimum tests I would request:

SMA 18

TSH

T3

T4

Thyroid antibodies

(I think Sedimentation rate is in the SMA 18)

Rheumatoid Factor

IGg

IGa

Anti-Transglutaminase antibodies (don't know the abbreviation)

Anti-Emdomysial Antibodies

Antigliadin antibodies

Anticholinesterase Antibodies

Brain MRI

Don't know if this is all-inclusive, but I hope it helps . . . it may be a start, and someone else on the forum can add . . . . Good luck to you, Lynne

That is GREAT! I am so happy that you have such a good doctor. It makes life a lot easier. The picture of the boys is soooooooo cute!

The dietician I saw just told us that Stonyfield Farms has more probiotics in it than any other brand of yogurt, and is gluten-free (at least the plain -- that's all I use, because I add my own fruit). Hope it helps . . . . Lynne

Thanks for posting that, Richard. I could imagine that seeing the avatar would be startling, but Grace is so beautiful, and it's a nice addition to the forum. . . . . Lynne

Don't know from where you are, but in the US, allergists usually specialize in Allergy & Immunology. They often forget the Immunology part. Make sure yours doesn't. Celiac is an autoimmune disease. They need to find out not only what foods to which you "react" (Allergy), but also the foods to which you are "intolerant" (immunology). You may not "react" to wheat on a scratch test, but still have elevated antigliadin antibodies. They are two very different approaches. Good luck to you both . . . . . ((((hugs)))Lynne

This started before I went gluten-free, but I need help, as well. I take Zelnorm, 6 mg (vs 3) 2 times a day, 2 Colace at night, put flax seed on everything I eat, try to eat raw veggies, eat TONS of prunes, raisins, drink lots of water, and yet . . . . .nothing. We're talking up to 10-12 days. Very uncomfortable. Any recommendations?

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

I liked that song a LOT when it was popular!

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 Open Original Shared Link

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 Open Original Shared Link

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: Open Original Shared Link

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: Open Original Shared Link 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 Open Original Shared Link 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 Open Original Shared Link

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 Open Original Shared Link, 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 Open Original Shared Link

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

Sometimes, with doctors, I think it boils down to this: Medicine is a Science and an Art. Unfortunately, sometimes we find "scientists" when what we NEED are "artists". Keep looking for your artists . . . . ((hugs)) Lynne

Holy Mackerel -- I cannot believe the nerve!! I think you were VERY gracious by saying "Oh thank you. . . ". I think that might have been one of those "bite my tongue" moments for me . . . . .where I usually don't end up biting my tongue enough.