tiredofdoctors

If you want them to feel our pain, then let's do this: Have the world's largest Celiac pizza-eating convention . . . . and then hold the Guinness Book of World Record for the largest number of port-a-potties used during a 24 hour time period!!!!!

Hey -- I just picked up on your thread . . . welcome to the forum!!!! Don't feel badly at all about being a dietician and having a "learning curve" to get through -- from what I gather from my dietician, celiac just isn't emphasized in the curriculum that much . . . .

The great news is that you are going to be a FANTASTIC asset for patients whom you treat/consult. They are going to be very lucky . . . I hope they appreciate you, and I also hope they appreciate the effort you have taken to educate yourself with regard to this.

BTW: heavy cream with gluten-free vanilla extract, turbinado sugar and blueberries . . . heavenly.

I don't have the normal "Celiac gut", but my neurologist recommended that I switch to goat's milk . . . much less casein than in cow's milk. I have to admit, I feel much better drinking goat's milk and eating goat's milk products only . . . . (Kind of grosed me out at first -- first had it at my BIL's farm -- had milked the goat myself . . . . EEEEEWWWWWW. Also, my neuro said that pasteurization is "highly over-rated" (?) if you are using the milk from a family farm like we were. Just so no one jumps down my throat for drinking non-pasteurized milk.)

Nancy -- I ate those about a week, week and 1/2 ago. The next day, I was even MORE clumsy than usual, had such trouble getting my bearings . . . couldn't figure what was going on. Now I know . . . . It's hard for me to tell when I've been "glutened", because I don't have the digestive stuff that goes along with it. Sometimes, I just think that it's because I didn't get enough sleep, etc. My husband and I were talking about the CC going on in the facility, and I said that I didn't want to chance it, but I'd eat what we had here . . . should have just thrown them out. Thanks for shedding some light on what happened to me, though . . . . . Lynne

Bev . . . . .

Thank you for contacting them . . . and for relaying the info to us! I've stopped eating Amy's stuff until the whole thing gets resolved . . . don't want to chance it.

Talk to you soon . . . . . "The Conception Faerie"

Because of the previous hassles which were involved in discussing this on a professional, clinical level in the past, I would be happy to talk with you about this . . . you can e-mail me at bodyworxinc@hotmail.com. I'm a physical therapist, and prior to having to close my practice, 80% of my patients were diagnosed with some type of proctalgia fugax, outlet dysfunction constipation, anismus . . . Lynne

My dietician recommended Freeda Vitamins. They are gluten-, yeast-, color- blah blah blah free!!! Seriously, they are void of so many unnecessary ingredients. I have their multi-vitamin, co-q10, sublingual B12. What I find pretty amazing is that, while they do have a mild smell to them, they don't have that horrible "vitamin" smell to them that some do . . . . So far, I've been really happy with them. . . . Lynne

For Blueberry pancakes: Get the frozen wild blueberries at Kroger . . . they do really well . . . taste great, not too big, and don't make the pancake "gooey" like the regular ones do .. . .

As far as pie crust, my mom made a GREAT cherry pie using rice flour for the crust . . . it was good. A little grainy, not flaky like hers normally is (boy do I miss it), but a little sweet and, overall, a really good crust. If you'd like, I'll ask her how she made it . . . . . Lynne

I agree with Richard. The parents should have the right to decide. If the child clearly doesn't want it, and the parents are being supportive, then as his advocate, they have the right to choose what medical intervention will or will not be initiated or continued. Lynne

Will need to pull out the information my dietician gave me -- I have a complete list of "safe" gums to chew -- will let you know as soon as I grab them. Going slowly since my last fall, so it might take a day . . .

Lynne

Amanda:

I also have to give an "up-side" story about this!!! I went on Depo-Provera years ago when it first came out . . . I LOVED IT!!!!! I got a shot once every 3 months (I thnk . . . been so long now I can't remember) No spotting, no cramping, no periods . . . It was GREAT!!! I was kind of bummed when the doctor made me go off it because I hadn't had a period for quite some time . . . it did take 9 months for me to start having periods again. If you are looking for a longer-term birth control, and aren't going to be in a hurry to get pregnant (potentially) -- the last post said her friend got pregnant in three months -- I'd say YES. I gained a total of 12 pounds, which was a little more difficult to lose than others, but it was worth it.

Denial and/or rebellion is probably VERY normal early in this stupid disease process. I posted on another thread, someone wanted to cheat . . . this may convince you to be very stringent with regard to gluten:

Open Original Shared Link

Redundant, I know, but if you could see the way I walk, the things I can't do because of GLUTEN -- you'd be extremely rigid . . .

I just don't trust BBW -- they can say what THEY do or don't put in their products, but they don't question their suppliers from whom they purchase about their ingredients.

Please take care of yourself -- you deserve that. Best of luck to you in this (sometimes very long) road to recovering . . . Lynne

This may convince you not to cheat:

Open Original Shared Link

If you saw how I walk, the things that I can't do, all because of gluten, you wouldn't ever cheat.

This is by far the best article that I have seen since being diagnosed with Gluten Ataxia & Gluten Sensitivity. I have taken in many of this particular MD's publications to my docs -- they are all getting educated -- and taking it very seriously. My one neurologist said that, after finding my diagnosis, that he was able to diagnose two other patients VERY early on in their disease process, prior to the amount of disability which I have. He said that he was sorry that he didn't know about this when I came in (although he said within the first two visits that he thought I had some form of Celiac disease . . . . ). I told him that he didn't know that it could affect me only neurologically.

Oddly, the neurologist at Johns Hopkins and at the Mayo Clinic do not believe in this . . . . they said that this MD was inaccurate, and that neurological conditions do not exist in the absence of true Celiac Sprue (!!!) . . . Hence, they diagnosed me with "Conversion Disorder" -- a psychiatric disorder in which you develop physical symptoms as a result of an emotional trauma. This was, however, despite the Psychiatrist at Mayo saying that I had absolutely NO signs or symptoms of Conversion Disorder . . . . .

Thank you for posting this one . . . I'll certainly take it into my next neuro visit. He will be glad to get this. Oh, also . . . because I had gene markers present for SCA on my genetic profile, as well, he is going to work in concert with these same docs in the UK to send samples of my blood over there to assist in their ongoing (and some new) research studies. This guy is really great. I am so glad I found him here.

I agree with Patti -- I always call the manufacturer myself. My pharmacist is so unbelievably busy, that I don't know how he keeps up with all the new medications coming out, much less the ingredients in them all! But, they are always very helpful in giving me the phone number of the manufacturer.

I was really glad that I called . . . my generic Synthroid, my generic Klonopin (which they were giving me FOR the spasticity that the Gluten Ataxia has caused), and one other one (can't remember) were all gluten-containing. Now, my doctor writes Name Brand Only . . . and I still call the company of the name brand one just to make sure!

Count me in! Rachelville sounds like a great place!!!!!! In the land of the Misfit Toys, my personal favorite is Herbie, the wannabe Dentist. Although the water gun that squirts grape jelly is pretty good, as is the Charlie in the Box. . . . . .

So, Susan tells me to read starting at page 164 . . . . there are a WHOLE lot of posts since page 164!!!!! But I will be Rachelville's official PT, and when everyone starts getting old and has back problems, neck problems, etc., I'll be your gal . . . . .

Dingos with rubber teeth . . . . interesting concept. That would work so that they wouldn't get the geese. But then, they also wouldn't be able to protect Rachelville, either . . . unless ONLY the geese protect it.

Chelsea . . . kiddo beats ma'am anyday. Trust me.

I think that really stinks. I have just had the same type of experience with the neurosurgeon. What a pain in the neck.

I can't believe that you have to wait three months for your mother to see the GI doc. That is not acceptable. Ask to get on a cancellation list . . . then call every day to see if there are any cancellations that day. You'd be surprised when you become a thorn in their hiney how fast your mother gets in . . . . . it works pretty well. Some offices just don't care, but some just want you to stop calling!

After reading your posts, I have to say that I agree with you. This guy, however, was a neurologist at Mayo. I gave him all the research that had been done in the UK about Gluten Intolerance causing neurological conditions only. He told me that he thought I had "conversion disorder" -- when you have symptoms which are there only because you've had a traumatic event. He had me evaluated by their psychiatrist, who said that I DID NOT have conversion disorder. The neurologist DELETED the psychiatrist's evaluation from my records (I requested a copy), and when I called the psychiatrist to ask him if I could get a copy of it, he looked for it on my records -- GONE. He wrote a letter to me, personally, telling me that I did NOT have conversion disorder, and told me to copy it and give it to my physicians. That's why I left the message that I did.

I agree that we need to educate our physicians. I always take new information, new studies to my doctor's appointments and I give it to them . . . they say they'll copy it, and I tell them, "No, I printed it for you." Then we go over it together, because I come up with questions asking what they think of this opinion, etc. It has served me very well. With the exception of this guy . . . . .

Sorry I gave the wrong impression . . . I am a very big advocate of educating physicians. I'm a PT, and we were ALWAYS trying to educate them about different aspects of musculoskeletal dysfunction! Now, I'm the "Gluten Lady"!!!!!

I didn't write a letter, but I did leave a message with his secretary . . . . . "I found out what the root of my trouble was . . . I have blah blah blah (too many to mention now) . . . . thank you for not helping me." It was to the doctor at the Mayo Clinic.

Does anyone know whether sulfites are capable of making their way into breast milk? Seriously, everything else seems to make its way there . . . . there was so much I couldn't eat when I was breastfeeding my two . . .

My mom called Hunt's . . . . they said that there is no gluten in ANY of their tomato products, including their ketchup . . . don't know if that helps or not. . . . .

That's the only way I made my kids' Halloween costumes. I would simply make them lie down on a piece of newspaper that was taped together to be their entire BODY, placed on the floor, then mark their whole body! Then, I would make marks where I wanted specific things to be placed. Then, measured some circumference things (arms, legs, waist, whatever I was covering!), and made front and back accordingly. My daughter has a smaller back than front, so I sometimes had to make accommodations for that. Once you get the knack of it, it's not too hard. My grandmother was a costumer . . . I watched her make patterns my whole life, so I kind of picked it up. I think she used uncoated butcher paper, if I'm not mistaken . . . although I'm sure she used the newspaper thing, because that's how I knew to to that . . . . She was the grandma that was pretty abusive . . . the one thing that I DID get from her was the ability to sew, and the ability to "visualize" what something should end up like, then take it from there . . .

Don't know if your children are gluten-sensitive, but there are several soy milks on the market that contain gluten . . . found out the hard way, after the dietician told me . . . . I know I'm kind of 'chiming in on the end', but just wanted to make sure they didn't get 'glutened' if they're intolerant . . . .

Lisa -- I have a VERY funny story about that . . . will have to e-mail it to you!!!!! It's not horrible, by any stretch, and certainly wouldn't offend anyone . . . if it's okay with you guys, it's okay with me . . . it's just about me sticking my foot in my mouth (as if I have never!) years ago . . . .

I'm from Louisville, KY. Had to laugh . . . I e-mailed the support group here in February, and finally got a response in June . . . . don't know if I'm interested in going or not.