tiredofdoctors

I'm in. Tell me what you need/want and what format, and I'll try to do my best. I'm trying now to develop a "compassion" program for med students here locally. They're always looking for speakers, and I figure a disabled physical therapist is as good as any for rallying the compassion vote!

Get out of town! You found gluten-free pizza crust at SuperTarget??? That is GREAT! In what town do you live? I may ask our store to order it . . . Thanks for the heads up . . . . Lynne

Gant -- I'm sure that if you had a questionnaire that you wanted completed, most of the people on the forum would be happy to help. There are a lot of great people who "talk" on here! . . . Lynne

My initial treatment was just to take Synthroid. It increased the levels of thyroid hormone in my system so that my thyroid didn't have to work so hard. It GREATLY reduced the size of the thyroid. Once the idiot endocrinologist I had to see took me off it, I begin having tons of trouble, then had to have it removed. Prior to that, though, treatment was a breeze. .. . . Lynne

Consider your request done happily. Hope you feel much better very soon . . . Lynne

The true Agave tequilas are really good -- had a chance to try them in Mexico. How pricey are the brands you listed???

YEA!!!!! Also, Dots (tropical and regular) are gluten-free; Tootsie-roll industries states that all their products are gluten-free (including Charms blow-pops, junior mints, junior caramels . . . )

Tiffany -- thanks for posting that. I have always wondered about the crystal and obviously, you don't want to go around asking everybody about their deodorant! I'm glad to know it works -- I'm getting it tomorrow! . . . Lynne

Felidae: I'm with you. I really like trying different kinds of beer. Since that's been taken from me, I take life with a grain of salt, a shot of tequila and slice of lime!

I know that mine have fluctuated. I started at either 34 or 36, then went down to 24, then went up to 60. I'm going to be tested in March because it will be 6 months that I have been gluten-free. If it's still at 60, I'm going to be really frustrated, because I have been more compliant with this diet than I have been compliant with ANY medical treatment throughout my life. I did read, in some article somewhere (I have become addicted to Medline) that your body can actually increase your antigliadin levels despite adherence to a gluten-free diet. (Again, don't know where I read that, so I can't tell you for sure that it's a valid study). Funny, though, I never looked to see what "normal" was. No wonder my neuro said that my first test was "high", but my last one was "EXTREMELY high" If I find that article, or talk to anyone who knows, I'll let you know . . . Lynne

I had to have my thyroid removed (completely) because of Hashimoto's which got out of control. (read previous post about the horrible endocrinologist I saw) It caused a humongous growth of my thyroid in an attempt to keep the level of thyroid hormone I needed. In addition, it became cystic, with hemorrhaging within them -- making it a higher cancer risk. I think diagnosing and treating Hashimoto's is really important -- my other docs feel that the autoimmune diseases I began developing are a "watershed" effect from the Hashimoto's going untreated. . . .Lynne

I think that your thread name is superb! I actually told our veterinarian that if, by any chance, he would start treating people I would be his first patient. Think about it -- vets don't even have the benefit of having their patients tell them what hurts! And 99.9% of the time, they're right! We have a food tax deduction here, but not an across the board deduction. We only need a prescription to deduct the food, though. I'm so sorry that your MD wouldn't give you the form -- what a jerk. . .. .Lynne

I'm concerned that the "allergy" MD didn't explore your condition further. Usually, they specialize in "Allergy and Immunology", and given that Celiac is an autoimmune disease, they should have been right on it. I would find out if this MD specializes in "Allergy & Immunology", and if so, I would report him/her to the medical board in your state. There is no justifiable reason that an immunologist would not know about the bloodwork which can be done. I would also suggest finding either another immunologist, or as the others have stated, a naturopath, because I certainly think you were shortchanged, at best, during this past visit. . . .Lynne

We carry the Gluten-Free Bible with us when we go shopping. My husband also printed out the Delphi list -- it's REALLY lengthy, though, and we just got it, but we plan on taking it on "long" shopping trips. With regard to the break-outs you're having, a good dermatologist can biopsy them and let you know if it is Dermatitis Herpatiformis -- another gluten intolerance ramification. It sounds, though, like you already know the triggers. I would certainly tell the doctor about those. Good luck with your journey . . . . Lynne

We have a "Best Doctors in Louisville" issue of Louisville Magazine each year. The amazing thing is, all the MD's are nominated and voted on by other MD's!!! Check with some of their patients . .. . . .

Really good info . . . and things I hadn't thought about. This is a really informative thread . . . . Lynne

Hez -- that is FANTASTIC! Not that this would be an issue for you, but even years ago, Disney World was the only place I knew of that had TRULY accessible handicapped restrooms. They're the size of a small bedroom, and have everything you can imagine for physically challenged individuals. While you're there, take a gander (not that you're going to want to spend your time scouting out toilets!), but it's just another way that they have incorporated so much thought into that park. I am so happy for you. Have so much fun . . . . Lynne

Oddly, because I have neurological damage from gluten, I was referred to a GI doc by my vitreoretinal surgeon! The GI doc was fantastic -- he said, let's do the bloodwork today. Do you want to know for sure if it's celiac? I said "yes" -- he said, then let's do the biopsy on Monday. (This was Thursday). It was all a piece of cake. Good luck to you. . . . Lynne

Rachel -- I don't know where my head was (usually either in the clouds of up my *%$, according to my kids, but that's another story ) -- HMO -- Oh my God. The reason I had to have thyroid surgery is because of an HMO. The endocrinologist I had to see took me off the synthroid I had been on for YEARS. My thyroid grew to the size of 4x normal on the left (that they could measure) and 3x normal on the right. It ended up growing around my trachea and down under my breastbone. I finally paid out of pocket to see my good endocrinologist. SLPINSD -- I had completely forgotten about that (probably have blocked it out of my memory to save my sanity) -- the HMO guy actually had my thyroid levels so screwed up that I had organic depression and had to go into the psych unit. I was discharged as soon as the psych MD saw my thyroid levels and told me to get a "good endocrinologist." I told him who mine was, and he repeated, "you need to get a good endocrinologist." I told him of the one I see now (that I previously saw), and he told me -- "It's worth the cash to go back to her. Believe me." When you find a good doc -- whether its MD, naturopath, whatever, and you're doing well -- stick with it. Best of luck to you, and I'll be thinking and praying for you. Keep me posted . . . Lynne

I am SO SORRY that you had that type of appointment. They are so disappointing. I have had those with numerous other specialties, but I have been very fortunate to have the most FANTASTIC endocrinologist. She has been so supportive throughout this whole thing, and when I went in in a wheelchair, she said -- "Oh, this is not O.K. -- who is your neuro? We have to do something about this immediately." When I see her in a couple of weeks, I'm going to ask her about the adrenal thing, as well. I had a significantly low DHEA in the past and was on supplements. I urge you to find another endocrinologist. DHEA has a converse relationship with cortisol -- low DHEA, high cortisol -- and the ramifications go on and on . . . Additionally, DHEA plays a significant role in the regulation of sex hormones -- don't know if you're male or female, but DHEA helps females convert estrogen into a usable form of testosterone. I wouldn't give up on this issue . . . I would seek out another endocrinologist -- and NOT tell them of this past visit! . . . Lynne

Hi Claire -- I tried to respond to your PM, but this darned thing wouldn't let me. Just to let you know, I think you're fantastic. Seriously, I appreciate all your information very much, and you have really helped make this transition much easier for me. I'm curious about your casein-free status, as well. The staple of my diet is a "smoothie" made with yogurt, protein powder comprised of Egg & Milk protein, flax seed and fruit. The casein portion is obviously LARGE -- so I'm a little concerned. Is casein intolerance prevalent with ataxia, also? Or, is it something else that I should have checked out? Any info is greatly appreciated. Lynne

celiac3270 -- could you please send me the list as well?? I've just been glutened and don't know how, because I have been REALLY strict with regard to controlling what I eat -- I've been on the gluten-free diet for 32 weeks now. Thank you very much . . . Lynne I'm at bodyworxinc@hotmail.com (almost forgot to put that in )

Oops! My fault! Thought it was you -- I knew it was a thread where you, claire and I were talking. Thanks for replying, though -- that was nice of you I tried hastypasty and it had information about gluten-free foods. (sounded obscene to me -- was afraid I'd start getting all kinds of weird spam -- but it had some information -- hard to navigate, though).

Patti - - you're right. It's braintalk.org! Thank you!!!

Another crisis averted

Vincent, you previously gave me a site to go to which lists gluten-free products. I have searched threads until my fingers and wrists are giving up! Do you know which site(s) to go to for gluten-free products -- I think it was hastypasty.com . . . . . .. .(something, something, something). Actually, I think that's where I found out about Tootsie Rolls! Thanks for your help . . . . Lynne

I would be interested, too -- any additional information about the program???