tiredofdoctors

I don't consider living a gluten-free lifestyle an "indulgence". I consider it the biggest inconvenience I've encountered so far. Trendy? Get real.

Deb is AWESOME! If she can help, she will!

Deb -- thanks for looking that up! That helps a lot -- I was looking at the "Anew" stuff -- I have to get rid of wrinkles by August! (DD wedding, you know!) Don't want to be the "gimpy fat mom with the wrinkles!"

I have ordered a new list, it's an entire book -- it will have all the chewing gums, etc. which are gluten-free. I know that Splenda is gluten-free. Am considering purchasing the Clan Thompson list (you can get it for your PC, handheld, or both, and it has upgrades 3x/year) I'll check the lists I have right now, and let you know about the chewing gum. I know I've bought some, so I obviously have SOME listed!!!!! Talk to you soon . . . Lynne

No problem -- I did a bajillion searches for the same reason. I got these horrible spots on my face from different products. I didn't have any trouble from the cetaphil lotion -- my biggest worry was touching my face, then biting my fingernails or something stupid like that, then getting glutened. The manufacturers would only GUARANTEE that the cleanser is gluten-free. I just use the cleanser now without water, or I use the neutrogena clean skin -- depending upon how much I'm breaking out. I'm 44 and I have acne and wrinkles. What a pain in the butt. I DO use Neutrogena's Anti-blemish Anti-Wrinkle moisturizer! I can't find any source of gluten in the cetaphil lotion, either -- but I'm kind of a fanatic about not being glutened now. (It affects my brain vs. my gut -- and your brain doesn't heal, so I've been warned a LOT about gluten) I use it on my legs, but make sure that I wash my hands afterward. The good news is that Softsoap liquid soap is gluten-free -- the clear stuff, too -- it goes on sale for, like, $2 for the HUGE bottle at Walgreens about every other week! We use that for our bath wash.

I really wish you luck on your journey -- if you have any more questions, feel free to post, PM me or e-mail me. I know where you are -- I've been there, done that and bought the T-shirt! . . . Lynne

Chelsea -- that is great news. I'm glad he's in rehab. Under Medicare guidelines, in order for a patient to stay in rehab, they must participate two times per day in at least two therapies: Physical, Occupational or Speech. That is a great place for him to be. Tell your grandmother to make sure that they are being compliant in scheduling his therapies. Speech therapists can do wonders with stroke patients -- so can occupational therapists. (Of course, I think that Physical Therapists can do the MOST -- just kidding ) Seriously, though -- I would insist on speech therapy -- given that he is beginning to talk, they can really work wonders. They can also get him assistive devices, such as an electronic word board, if he has the type of aphasia (speech disorder) where he knows what he wants to say, but can't get the words out. Don't let them get him a walker -- Medicare will pay for one assistive device. If there is a chance that he will need a wheelchair, make sure that Medicare pays for that. The walker is MUCH cheaper! Also, find out about other things -- elevated toilet seat, etc., that Medicare will pay for. I know that you said that he will be in there for a month, but those weeks go by REALLY fast, and you need to start preparing for him to leave the day he gets in there. I like that he said "bye" to the doom and gloom girl! That shows that he REALLY knows what's going on -- maybe more than the doctors I'm so glad for such good news. He will continue to improve -- the brain just continues to make more and more pathways -- but it has to be challenged in order to do that . . . Hence, the emphasis on the therapies! Though I'm not much of Martha Stewart fan, "this is a good thing" . . . Love, Lynne

Hi there -- welcome to the forum . . .

Just wait -- you'll get PLENTY of answers that say you're not the only one with mixed answers from physicians! Practically everyone on this forum has gotten bad information at one time or another. There are blood tests which can be done: IgG Antigliadin antibodies, IgA Antigliadin antibodies, Antitransglultaminase antibodies and Antiendomysial antibodies. The last TWO listed are the ones which are much more indicative of Celiac disease. An endoscopy with multiple samples of the small intestinal villi is the "final" definitive answer. A good GI doctor will perform all of these. There are also tests through, I believe Enterolab, but I haven't had experience with them . . . there are many on the forum who can help you with that.

I do not have Celiac disease; I am, however, gluten intolerant. I have had "outrageously high" antigliadin antibodies according to my neurologists. The manifestation of my gluten intolerance has affected the cerebellum of my brain. By the way, your doctor is wrong . . . gluten intolerance CAN kill you. Ask my neurologists.

There is a book by Peter Green, MD -- it is called "Celiac Disease: The Hidden Epidemic". It is a very good book, and I would recommend it -- especially prior to going to the GI doc.

There is a thread on this forum -- under "coping" which gives us a place to vent and to tell our stories; one of the participants is a writer and is going to write a composition of these stories. You might want to look -- it is eye-opening. I think that the average is 6 doctors before you get a correct diagnosis. I might be wrong about that, and there are people on the forum who are much more knowledgeable than me.

You're probably at the beginning stages of frustration with doctors. I think all of us have gotten used to it. You'll get by, though, and you'll get to the correct diagnosis -- just hang in there! . . . . Lynne

For whatever reason, my dietician told me to avoid millet. Can't remember why right now. I think that some of those ingredients were WAY extreme, in fact, I think the whole thing was a CYA letter. I can't believe that they send THAT to their consultants. Basically, they're saying: "Don't sell our products to patients with Celiac."

To be safe, I have limited myself to the following: Neutrogena (I've published the list somewhere in a thread -- if you need it, let me know), Cetaphil Cleanser (the moisturizer is NOT gluten-free I found out a few weeks ago), Neutrogena moisturizer and Bare Escentuals make-up. The whole thing is a pain in the arse, but my days of being the "product queen" are now over! I used to try everything new on the market -- not anymore -- I'm too much of a chicken!

I have a list of products which my dietician gave me, and have ordered another -- if there's something you want me to look up, I'll let you know if it's on there . . . . Lynne

I use Mary Kay for almost everything, though I aven't checked what's in it. I will be calling my Mary Kay gal tomorrow to find out - I'll report back.

And yes, carmex ROCKS!!!!!!

Good luck -- my contact with Mary Kay said that I needed to contact my representative, because they could get a LIST of all gluten-free products. My husband's best friend's wife sells Mary Kay (and has hounded me with a vengance), but I asked her to get the list. This is lengthy, but here is the letter they sent to her about her request:

RE: Lynne Wagner

Dear Tricia,

Thank you for your inquiry to Consultant and Medical Relations.

The ingredient information below has been evaluated for those with Celiac Sprue and provided using our best efforts based on our current knowledge. Although we have attempted to be complete, because of the vast number of ingredients we receive from different sources, it is not possible to guarantee that our products are completely gluten-free. Additionally, the information below may change without prior notice, as we introduce or modify products.

Ingredient listings can be found on our packaging material, in accordance with FDA regulations, using names which are standard throughout the cosmetic and fragrance industry.

Please consult with your physician for guidance.

The following are examples of gluten ingredients, to the best of our knowledge, should be avoided: Barley, Dextrins, Hydrogenated Soy Glycerides, Hydrogenated Coco-Glycerides, Hydrogenated Palm Glycerides, Hydrogenated Palm Kernel Glycerides, Hydrogenated Tallow Glycerides, Hydrogenated Vegetable Glyderides, Hydrogenated Vegetable Oil, Hydrolyzed Wheat Protein, Hydrolyzed Wheat Proein Hydroxypropyl Polysiloxane, Hydrolyzed Whole Wheat Protein, PEG-6 Caprylic/Capric Glycerides, Sunflower Seed Oil Glycerides, Wheat Amino Acids, Wheat Bran Extract, Wheat Extract, Wheat Germ Glycerides, Wheat Germ Oil, Tall Oil Glycerides, Maltodextrin.

Other ingredient information to be aware of:

- Alcohol Denat: source usually synthetic, but cannot guarantee from a grain source.

- Colorants: May utilize a grain ingredient in the manufacturing process.

- Citric Acid: May utilize a grain ingredient in the manufacturing process.

- Millet: may need to be avoided, pending further research.

- Oat Flour: cross-contamination can occur during processing of oat and what.

- Glycerides, monoglycerides, diglycerides, and triglycerides: May contain a potentially wheat-relalted carbohydrate chain used as a binding substance in their preparation.

-Flavor/Flavour/Natural Flavoring: products containing flavors should be avoided.

- Vitamins - please call 1-800-652-9848 for additional details on Mary Kay Daily Benefits Vitamins.

Informative internet sites (NOT endorsed by Mary Kay)

www.celiac.com

www.csaceliacs.org

Should you have any questions after reviewing this information, please don't hesitate to contact Consultant and Medical Relations at (972) 687-5577, Monday through Friday from 8:30 a.m.m to 5 p.m. Central time.

Sincerely,

Debbie Brooks

Technical Correspondent

If they give this to their consultants, what are they going to tell US???????

Despite the fact that my husband is the celiac and I am not this topic is very important to me. After 27 years of marriage he still kisses me.....so I want to make sure that I am wearing gluten free make up and lipsticks.

That is so SWEET! I love to hear stories like that -- it makes my heart feel good.

Someone posted about Garnier Fructis somewhere else -- they told her that the shampoo and cream rinses were absolutely gluten-free, but individual styling products needed to have a phone call to the company to be sure . . . can't remember what thread it was on, but I know it was a couple of months ago . . . . Lynne

That is a GREAT website! The only difference I found was, that in the lab "norms" that my MD's use, the normal range for antigliadin antibodies is 0-11 for negative. Thanks for posting a really informative site!

The biopsy only represents that there isn't damage to your small intestine -- yet. The positive antibodies (especially if you have Antitranglutaminase and Antiendomysial antibodies) mean that yes, you are positive for Celiac Disease. If you have elevated Antigliadin antibodies, it means that you are gluten intolerant. All of these mean that you have developed an autoimmune disease. Gluten will continue to attack your body -- sometimes in ways that aren't apparent for quite some time. I would encourage you to begin a gluten-free diet, with or without damage to the intestinal villi. If you have the antibodies, you do have the autoimmune disease. The only way to control it, so far, is through a gluten-free lifestyle. Good luck to you . . . Lynne

I'm in!!!!!

Okay, now I've got to try the Burt's Bees Shimmers -- you guys make them sound GREAT -- you ought to get paid for the endorsements! That's what I miss about Aveda lipstick -- the peppermint! (Aveda states that all of their products contain gluten )

Vincent, if you ever DO try lipstick, we want the picture to be your new avatar!!!!!

Be careful with the Bare Escentuals moisturizers. I use the make-up, and received some free samples -- all contained "hydrolyzed wheat protein". Just check the label.

I'm a girly-girl, too, but given that I was a single parent to a boy, I've had to tone that down and toughen up. My son still says that, even though I'm a worth opponent in sports, I'm still VERY girly-girl!!!!!

Just dawned on me -- and these are the times that it is the toughest -- I USED to be a worth opponent in sports. . . . .

You're welcome -- we HAVE to educate these physicians. I'm sure that mine now think that I'm a B*****, but I just don't care. Ignorance is not bliss when you are a physician. I guess, regardless of what it takes, mine are going to become informed. I will not allow them to continue to keep stabbing in the dark. This is my LIFE they're talking about -- not just some sports game or a new car they're looking at. They're going to put as much effort into researching my disease as they do researching the newest car they're going to purchase!!! It did make my one neuro get off his butt and do the genetic testing that I needed! I told him that my father was willing to use his frequent flyer miles to send me to England to participate in their research projects. Evidently that was a little threatening to him, so he said, "haven't we dont genetic testing on you???" I told him that he hadn't even done the HLA DQ2 & 8. He said, "I'm sorry, I thought that we had done a full genetic work-up." Yeah, right. At any rate, it got the ball rolling. I guess if you're a squeaky wheel, you really do get the grease!

I don't know about the celiac center. Despite being diagnosed with "gluten ataxia", I was referred to neuro, and was never referred to the celiac center -- which, given my antigliadin levels, should have definitely happened. My experience with neuro was NOT good. To the extent that we threatened to report them to the Minnesota Attorney General. I've heard really good things about the celiac center, but with regard to Neuro -- forget about it.

Can you guys imagine all of us getting together with our craft things? It would be so much fun!! We ought to go up to Shirley's place -- I haven't been there, don't know if you have either.

I don't have pix of my work, because it's all in storage. Hope it hasn't been smashed. I did find my glass grinder (finishes the edges), and the stained glass supplies, but so far no finished products! My parents, in an effort to hurry the process up, kind of put lots of things in boxes that didn't necessarily "jibe"!

The Hobby Lobby in Jeffersonville, IN, has AMAZING glass. It goes on sale for 1/2 price about every other month or so. I just salivate as I look through it! I have a sun hanging (about 12" x 18") and a moon hanging to match. Have made quite a few candle holders (they're easy), and a couple of ornaments. I have a kit to make a kaleidoscope for my mom, but still haven't done it. I think my problem is that, I see something that is fun to do, then I start doing it. But I like everything!! Therein lies the difficulty!

I still say that if we all got together, we would have a ball! Rachel & Jen could teach us scrapbooking, Shirley could teach us -- well, just about anything -- , Kbowman could teach us stained glass and mosaic work -- it would be GREAT!!!!!

I could rent a U-Haul and bring all the stuff I have! (Scrapbooking, Card making, Stained Glass, Jewelry, let's see, what else . . . . !) What fun!!!

I love this thread! You guys are so fun, and so creative, and so generous with your ideas and instructions! Talk to you soon . . . . . . Lynne

Chelsea -- I don't think you're whining. I think you're grieving, and rightly so. I'm so sorry about your grandfather. I know that those surgeries are very risky -- when the plaques release like that, it can be dangerous. The same thing happens when they do surgery on the Carotid arteries.

Your grandfather may not have made all the recovery that he is going to, by any means. With regard to stroke patients, we don't consider them Maximum Medical Improvement until 18 months post-stroke. The brain is a marvelous organ -- it can re-route pathways to improve its function. I don't want to give you false hope, but all may not be lost. The human spirit can often overcome things that the doctors can't.

I'm sorry that you're not feeling any better since being gluten-free. Since mine is not in my gut, I don't know what to tell you about that. I'm really not qualified, experience-wise. My advice would be that it takes time for your body to heal -- depending upon how long you were sick prior to being gluten-free, three months may not be near long enough for yorur body to heal.

I hope that you feel better soon. Please know that you're in my prayers, as well as your grandfather. Remember to take care of you, Love, Lynne

My knowledge about this is kind of limited, so I would wait for some others to chime in here before going out and buying stuff! From what I know, peanuts (the regular kind) are O.K., but dry-roasted are iffy. Smoked nuts (like smoked almonds) -- a definite "no". Cashews are O.K. -- I don't even think they have dry-roasted cashews. I guess it boils down to -- simple is best!

I gave both my neuro docs handouts of things that I had downloaded with regard to Celiac affecting solely the brain (since that's my problem). I sat there while I made them read it! I gave it to them, then started pointing out things that I wanted them to specifically see. I also wrote down Peter Green's book -- and told them that it was a worthwhile read for them. My one doc actually got it! I've gotten to the point that I'm pretty hard-headed at the doctor. If I'm going to pay the kind of money that I have to pay for a 10 minute appointment, by golly they're going to at least pay attention to what I have to say!

Jen -- stained glass is very addictive! Once you start, it's hard not to want to purchase every single type of glass that you can get your hands on! Whether you can use it or not -- it's because its "SOOOOOO BEAUTIFUL!" It's really easy to do -- a little time consuming -- but I'm also a little anal-retentive about it. The woman I took classes from wasn't -- she would just say "oh, you can just fix that with a little solder."

WRONG!!!!!!! It has to be put together exactly right, THEN fixed with solder, in my book! Of course, it took me twice as long as anyone else to put the stupid things together! But it is FUN!!!!!

I'm with you -- my daughter is getting married in August, and I'm going to have the same problem! I have Sjogren's syndrome, so I don't have enough tears -- the eye doctor said that he is considering putting silicone plugs into the tear ducts that drain the tears OUT of your eyes, so that I will have more moist eyes. I asked him if, for one day, he could put the plugs into the ducts that put the tears INTO your eyes, so that I won't make a mess of myself when my daughter gets married! He said no, unfortunately. I've tried Covergirl waterproof mascara -- it's really good.

That is AWESOME!

Funny thing is, my kids grew up eating Tofu, not even knowing it!! Had allergy testing done as an adult (hadn't had it done for YEARS) and I'm REALLY allergic to soy! "It's like my mother used to always say . . . Little Roseanne Rosannadanna, it's always something . . . .." (Gilda Radner)

I agree with everything that's been said. The biopsy is a breeze -- NOTHING to it. You swallow some stuff to numb your throat, they give you a little happy juice, stick a brace between your teeth, then the tube, and it's over. Piece of cake.

I would highly suggest that you go to the site that JenVan recommended -- she has LOTS of knowledge about those kinds of things, and, to my knowledge, always knows the best ones to pull up.

Take a deep breath, take things one at a time, and it's going to be fine. Keep us posted on how things are going, and welcome to the forum . . . . . Lynne