tiredofdoctors

Broncobux: The only thing I can think of your topic at the moment is Adam Sandler's song about the Lunchlady. Will read it seriously when I'm not so punchy!!!!!. . . . sorry . . . Lynne

I agree with Nisla. I would either 1)insist that the doctor take a more proactive approach in your diagnosis or 2)find a different doctor. There are a multitude of physicians out there now -- it's a buyer's market!!

She's also right in that, you don't need the doctor's permission to lead a gluten-free lifestyle. Just because he/she is a jerk, don't base your healthcare needs on an answer that may be, in fact, wrong.

Just chiming in there . . . . Lynne

Even if you have a negative biopsy, you still have AntiGliadin antibodies -- your body is in attack mode. The best thing you can do for your health, knowing that, is continue with a gluten-free diet. If you want to discuss at more length, e-mail me at bodyworxinc@hotmail.com (It's a long, involved story, and most of the people on the board are probably sick of it -- and shaking their heads yes right now!) . . . Lynne

The relief of the brain fog you could be feeling is that, AntiGliadin antibodies destroy perkinje cells -- which are located primarily in your brain. I am negative celiac -- neg Antitransglutaminase, antiendomysial, and negative small intestine biopsy. I do, however, have gluten ataxia -- and walk like the worst drunk you've ever seen. Can barely stand without falling. When I'm glutened, it's a guaranteed 3 day in bed, can't lift my head up off the pillow kind of thing. Don't be upset about the negative celiac, but if your antigliadin antibodies are elevated, it is an autoimmune response -- not an allergy -- your body is in attack mode. My recommendation: Stay off gluten, and if your symptoms continue, contact a (compassionate) neurologist. They're kind of hard to find, but when you find one, stick with him/her. I'm wishing you the best of luck . . . and prayers and ((hugs)) are going out to you. . . . Lynne

Out of curiosity, did insurance cover any of the cost of the lab work? I have two kids, 19 and 23, and I don't want them or their (future) children to suffer any of the stuff that I've had to go through recently. I have been told that I HAVE to be gene tested, but no one has made mention of my kids. If it is covered through insurance, the doctor can certainly maintain that it is warranted, but 880.00 is kind of steep for two kids if it isn't right now. The 19 year old is getting married in August (I know she's young, but they're in love, blah blah blah -- and actually, he's a really good guy. We like him.)

You guys are so funny My stomach is hurting from laughing so hard! I bought my husband a key-chain that says: "The difference between Genius and Stupidity is that Genius has its limits"

I knew that da$%^# celery would catch up with me some day! Thanks for a GREAT laugh. . . Lynne

ChelsE: My husband is a Naval Architect (read: engineer). You nailed the engineering personality! "Enough" and "Cheap" -- I was reading this out loud to my husband, and he was howling laughing!!! We just had this discussion!

Vincent -- sorry you're having such a horrible time. Did like, however, the reference to Mr. Incredible -- in the words of Edna Mode "It's my way or the runway"

Hope everything is in altoids shape soon! Lynne

I think you're right. I was talking with a friend of mine last night -- she's an Occupational Therapist -- the first words out of her mouth were "First, if the fries made her child sick, why did she keep taking her there? Second -- if she continued to allow her child to get sick, knowing that each visit made her sick, why isn't Child Protective Services involved?" Hmmmm....

Broncobux: Pretty funny, because I PM'd Richard and asked him to "help us out here"!!! Interesting that distilling removes it, but it makes sense -- in distillation, all you get is the "steam" portion of what you're "cooking". Also -- did you have a happy birthday???? . . . Lynne

Didn't know you are an attorney, but I agree with you wholeheartedly. What a crock . . .. .

Jen, I have to agree with you -- there was nothing like their biscuits with apple butter! Oh well, another restaurant eliminated!! Don't know if you guys have "Bonefish" restaurants in your area, but they have a gluten-free menu that's pretty extensive -- this is coming from a friend of ours! He's a pharmacist, but now that he knows I need to be gluten-free, he's checking out all the restaurants he and his wife go to!!!!!!!

Patti -- I agree. My initial thought is -- if cooking removes gluten, then why do we all have to cook gluten-free????

Heather -- I think it's pretty normal to feel this way. I was sent (by my doctor), to a counselor to work through the issues that I had surrounding new disability, adjusting to being in a wheelchair, family issues, etc. We talked a LOT, though, about the new diet. She recommended pretty much ALL of what these guys have posted. My husband and I have gluten-free shopping nights, we scour restaurants for gluten-free menus, it's become kind of a game for us! Still have issues with some family things - like birthday cake and non gluten-free ice cream, but still can come out laughing because of my husband. It's not that I don't have my days, though -- and I've only been gluten-free since October!! I'm so ENCOURAGED that you've been gluten-free for a year!

I think the analogy to your "first year birthday" is a great idea. AA, NA, etc. uses that model, as well. It really works in those cases, and I think that, given this is a totally new lifestyle, it's appropriate here, too.

Good luck to you . . . I'll be thinking of you and sending "good vibes" your way! . . . Lynne

The dietician gave me samples of Larabars -- they are really good! Now I'm going to have to try the Okari bars! -- Don't need to hear of any other "sweet tooth satisfiers", though -- I have to lose weight -- my daughter is getting married in August -- I don't want to be the "fat mom" vs the "skinny mom"!!! I'll feel like the segment that used to be on SNL -- "The Big Butt Family"!!!

P.S. Just kidding about not needing to hear about any other sweet tooth satisfiers -- obviously I looked at this thread!!!!!

Wheat contains gluten, and you can't separate those out. McDonalds is claiming that they were told by the distributor that because their french fries are "Par-fried" -- meaning that they are partially cooked prior to being frozen and sent out to the restaurants, that the gluten is eliminated. There is no real evidence to back up that claim -- gluten doesn't magically disappear when heated.

With regard to the fries "causing" the child's illnesses -- well, that's another story. As we all know, celiac disease is an autoimmune disease -- you have to be genetically predisposed to some extent to developing it, the physicians believe that you have to have some kind of environmental "trigger" (usually a virus). In other words, the cosmic forces must be all (mal) aligned in order for you to develop an autoimmune disease. It's "iffy" at best that french fries caused celiac disease even if they were made entirely from gluten!

As for truly diagnosed celiacs / gluten intolerants -- that's again, another story. If these fries are fried in oil which contains gluten, then there is, to some extent, gluten in them. I don't know how many parts per million, but I'm not taking any chances!

Hope this helps clear some things up . . . I'm not the "guru" of celiac -- there are a lot of members on this board who are MUCH more educated about it than I -- but maybe this helps. . . . . . take care, Lynne

Hi Sagesmama! Welcome to the board. I think that you will find that there are some VERY knowledgeable, kind, caring people here. That has been my experience, at least. I agree that it is a lot to take in, but I hope that you get a dietician that was as good as my experience yesterday. She made things a LOT easier. I wish you good luck, and hope that Sage does really well. Vydorscope would probably be a really good person to contact . . . . I think you're both in the same boat! Take care and welcome . . . .Lynne

I don't know about the scar fading cream. I do know, though, that when I was practicing (PT), I would use silicone gel sheeting for scars. Nexcare makes those now (about $27 for a box -- not bad at all) and Curad makes a polyurethane (I believe) sheet which is clear. You can put both on your face at night. Studies have shown that you don't get any additional benefit using either more than 12 hours at a time. I have "hypertrophic" or "Keloid" scarring -- the gel sheeting keeps the scars flat, and makes the color go away. I know that there are silicone gels -- topicals (I think Nexcare makes one of them) that do the same thing. I had to use that on my neck after I had my thyroid removed. It made the redness go away really well. I think another company makes one as well. I would recommend any that say "topical silicone gel", because I've had really good results in the clinic and personally, as well. Also, you can use them at night, and don't have to worry about it under your make-up, etc.. Good luck with it -- I know it can be a pain! . . . .Lynne

I agree completely. The thing is, if you look at our television programming in Louisville, slimeball attorneys are every other advertisement on daytime TV. Now, the latest ad is that, because Personal Injury Protection coverage is a mandatory minimum of $10,000. Now, the ads are all saying "Have you been in a car wreck that wasn't your fault? You can get $10,000."

I'm sure those types of attorneys will be advertising about the french fries as well.

If the parents of that child DO get money from McD's, I hope that there is a trustee to oversee the funds. That way, the money will be used in the appropriate manner -- to ensure the better health of the child. I think that is a really good point.

She's in Louisville, KY. Her name is Beverly Kastan -- I highly recommend her. In fact, I called my doctor's office and recommended her to him.

I figure it this way -- all the stupid McDonald's french fries I ate, not knowing they contained gluten, were working to destroy my brain, my eyes and my peripheral nerves. I'm not going to sue them. If anybody had a good case, it would be me, I believe. I can provide documented evidence of continued progression of the condition, despite being on what I THOUGHT was a strict gluten-free diet. I can show MRI images with continued cerebellar degredation. And still, I don't think that trying to gain cash from McD's is a good idea. I don't think that it would serve any good purpose to file a lawsuit against a company who is NOT mandated to disclose the ingredients of their food. All it will do is serve as a warning to OTHER restaurants (Not that McD's is a restaurant -- I'm using the term loosely) NOT to serve the gluten-free community. McDonald's screwed up. Yes, they certainly did, and big-time. They had a really LOSER PR firm. Yep. That, too. But, the long-term repercussions of lawsuits of this type are, I believe, very detrimental to the gluten-free community.

I am not bashing the people who are suing McDonalds. I am sure that they feel entitled to whatever damages they are seeking from McDonalds. I just feel that they are also possibly shooting themselves in the foot when it comes to long-term dining issues and feeling "food safe" in places in which they are eating. I also question whether those types of issues are of importance to them.

If these particular litigants are simply trying to gain a dollar or two from McDonalds by capitalizing on their mistake, or if they are using their child to gain the same, then I have little regard for their ideals or morals. Some things, although tempting, are simply wrong.

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.

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.

Unless McD's pays to make these people go away, it sounds as if they have absolutely no case. It will be difficult to get credible witnesses and evidence to say that this "caused" their kid to have celiac. Richard made a good point about the attorneys. You can find a scumball attorney anywhere who will file a suit based a NOTHING in order to try to cash in on a few bucks.

Just FYI: The woman who sued McD's for the hot coffee: her daughter had POA and filed the suit "on her mother's behalf . . . . ." Does that sound familiar?

I agree about the more harm than good part, too. I also agree that these people are totally off the wall. All the defense counsel has to say to defend their client is that the child was genetically predisposed to celiac -- usually with autoimmune triggers, it takes a VIRUS to activate it, as well (in my case, I caught Coxsackie (sp? virus from one of the kids I treated -- they think that's what activated it, because I caught it late in life. (usually a childhood disease). In addition, I don't know if they can mandate genetic testing, but if the kid tests negative for Celiac genes, their case is down the tubes. Meanwhile, all the other companies are freaking out about labelling their products "gluten-free". It appears that these people saw the news, found a scumball attorney, and hit the ground running. That's kind of disgusting -- using your kid to get money.

I posted earlier about this under "Publications & Publicity" . . . I'm just a fence-sitter. Saw so many bogus suits when I was practicing that it made me sick . . .