tiredofdoctors

Have replies on the way . . . . Lynne

Went gray at 21 -- have colored my hair for years -- went for a time that I didn't (couldn't get out to get the stuff), and saw a good look at my roots --- WHOA

I use Clairol color and use a 30 volume creme developer. It's easy to use, and cheap. All you have to do is mix equal parts, then start at your roots and go. I buy it at Sally beauty supply. Don't know if it's gluten-free, but I make sure not to get it into my mouth, and it doesn't give me the horrible rash that things that I know contain gluten have given me.

Given how gray I am, that I'm only 43, and that my husband looks about 20, there's NO WAY I'm not going to color it -- that's the only time I'm NOT gluten-freaky!!!!! (Vanity, thy name is Lynne . . . )

Nothing to worry about -- it's a piece of cake. I had a colonoscopy, at the same time, too. I agree, though, about telling the doctor that you want to be fully sedated. I wasn't, and they were shocked when I quoted everything that they said -- they thought that I was. It wasn't the most comfortable thing being awake. I did, though, get to watch it on the monitor. Still, I would recommend full sedation. The only part of my recovery was that, because of the colonoscopy, I couldn't eat roughage for 5 days. No Worries! You'll be fine! Hugs, Lynne

I know that this is going to sound crazy, but bear with me . . . I'm a physical therapist. Prior to being disabled by this disease, I owned my own clinic. I treated women's health issues, including urinary and fecal incontinence, but I also worked with a sex therapist and treated women with pelvic pain. They all reported these unbelievably painful bowel movements. I didn't find ONE of those patients that didn't have a significant problem with their sacroiliac joint(s). I was telling a pediatrician about one particular patient who had to hold onto her husband's arms, put a towel in her mouth and scream in order to have a bowel movement. The pediatrician just looked at me and said, "would you consider working on a teenager?" I said yes -- the girl had fallen off a horse -- lo and behold, the same problem with her sacroiliac joint. The pediatrician kept asking me to see kids younger and younger -- the youngest I saw was a 6 month old that was a twin, and was the one who was pretty much smashed by the other one.

What happens is that the sacrum goes into a torsion -- it's usually from some kind of fall that was a little traumatic -- maybe they cried a little more with this fall than others, or even from stepping off the curb wrong. The nerve root which exits the sacrum (S2) innervates the rectum -- if it is irritated, it can cause the rectum to go into kind of a "non-stop spasm". Usually these kids squirm on the toilet, trying to find a good position to poop -- they're trying to get the muscles of the rectum relaxed.

I swear to you that it works. I used a very gentle electrical stimulation to relax the nerves, with a warm pack on their back (they were lying on their tummies) -- usually, they started passing gas A LOT during the 20 minutes that it was one -- the parents would apologize all the time -- I just laughed! Then, I would do VERY GENTLE manual therapy to get the sacrum back where it needed to be, then gave them a "sports band" which was a band of special material to which I attached a sacral block that I made to fit them. Within 2 hours, usually, they had a bowel movement which wasn't painful. With regard to the electrical stimulation -- it is very safe for children, and I didn't have one who didn't love it. One 3 year-old said "Can I just have 5 more minutes?" It feels like a massage.

I know this sounds like voo-doo therapy, but it's all about the biomechanics of the nerve roots which innervate the rectum. (Maybe this is bragging, I haven't figured that part out yet -- but my "mentor" and the instructor with whom I took all my courses regarding these issues in adults said that I was the first person in the US to do this with kids. She wanted me to publish articles so that I could get credit, but it wasn't about the credit -- it was about getting the kids better.) From what I have read, there are several manual physical therapists who are treating kids with this problem throughout the US. I would look into it -- I'm not kidding -- it works.

I found a RD in my city who knows about celiac!!!!! I told her that I have gluten intolerance (Ataxia vs. celiac), but still needed to be gluten-free for life. Told her, too that I want to lose weight, and it's just not happening. She said that she is very familiar with gluten-free diets -- wants me to bring the books I have, and she said that she has a wealth of information which she will be glad to copy for me. She actually took a course offered by Shelley Case, the author of Gluten Free Diet: A comprehensive resource guide.

She said that we're going to sit down and develop a game plan for me, with an outline of what I need to do and not to do in order to stay in my gluten-free lifestyle and still lose weight. I am EXCITED!

Unbelievably, I found her in our yellow pages. I looked under dieticians -- a lot of them advertised that they specialized in "institutional nutrition" -- mostly nursing homes, so I figured they wouldn't be a good fit -- they're used to adding or subtracting caloric content for patients. She was just listed independently, and I called and voila! And, to boot, she only charges $75.00 -- I can take it off my FSA. My husband and I are unbelievably excited. . . . Lynne

I think pro-active is the way to go here, too. I'm only 43, I'm not a celiac (have Gluten Ataxia), but when I had my endoscope, they also did a colonoscopy. I only had 2 polyps, and they removed those. If you know you have them, I think it's time that they go bye-bye. They are the precursor to colon cancer. Mine were non-precancerous, which was good, but it also means that I'll have to have a scope more frequently, and certainly not wait until I'm 50. I think if you present your conditions and symptoms in an organized, focused format, the doctor won't have a reason NOT to listen to you and not to take you seriously. I'm sending good luck your way, and praying for you . . . hugs, Lynne

Louisville, KY. We have SNOW!!! Of course, we won't tomorrow, so we need to enjoy it today! Jen lives in Indianapolis, and they usually get hammered a little more than us -- actually a LOT more than us, considering that she's just two hours up the road. My aunt lives there, and we call and compare snow stories! Right now, though, my aunt just calls to hound me as to whether I've joined the Y to swim yet -- she said she's going to be on my (butt) until I am swimming at least 4 days / week! (the doctor told me to swim -- hopes it might help my coordination). Well, we've been watching girls Hockey -- which just seems wrong to me -- girls beating each other with sticks, but the US just beat Switzerland, so I guess its time for me to feed the birds! Talk to you soon . . . Lynne

This was what Neutrogena sent me when I questioned them about their list saying "Wheat-free":

We do not currently maintain a list of products free of corn, barley, rye or other grains. We will certainly share your interest in a more detailed gluten-free list with the proper authorities.

I don't have any reaction from them, either. The one thing that I know contains wheat and a lot of wheat by-products is the newest microdermabrasion kit. It's a shame, too, because they're the only company that uses the same ingredient that the MD's use to sandblast your face.

Judy just made me think of this -- there is a book -- I think it is called "The Dance of Intimacy" -- in fact, I'm almost 100% sure. I read it when I started making big changes in my life and in my assertiveness level. The book describes the changes which occur within relationships when one person changes and the others don't. It gives some very good coping strategies, but also is really comforting that it's O.K. for you to change -- and the other will have to eventually come around. It's very good . . . . Lynne

I'm pretty leary of getting glutened. I have Amy's frozen dinners, and I like them, but I don't think I'll be eating them any longer because of the potential for cross-contamination. . . . . Lynne

I agree with Richard. I thought vinegars were made without gluten -- I was under the impression that the only ones which were questionable were "Malt Vinegar" (obviously) and "Balsalmic Vinegar". . . . Lynne

naaah, you can stay -- we're having fun! How much snow do you have? Ours is just starting -- we're getting some sleet but no snow yet. Can't wait until tomorrow morning -- I love waking up to see it all white! I think it's just beautiful! Then I go outside and feed the birds -- have to make sure that they have seed & suet! I also feed the squirrels, which my husband laughs at, because he says most people try to keep the squirrels away, and feed the birds. I figure it this way -- if I give the squirrels the stuff they like, they'll leave the birds' food alone! At any rate, don't stray from this thread!!!! I'll have to hunt you down like I'm doing with all those companies! . . . . . Lynne

I think Debmidge has a really good idea. When you approach them with a calm, firm attitude and a very valid argument, what can they do? Basically, right now they've shot themselves in the foot. I think you're in a very good position to argue your point -- and get the results you need. Good luck -- but I'll bet you that it works. (Debmidge -- seriously -- a really good idea) . . . Lynne

Okay, I'm going to reveal the really passive-aggressive side of me. My birthday will be coming up in a couple of months -- there are two more coming before me. I know that there won't be anything for me to eat birthday-wise at these two. So, when it comes to my birthday, my husband and I are going to tell my mother that my husband has the cake taken care of. When it comes time for cake and ice-cream, we're not going to have any there. When they ask where it is, we're going to tell them that we're having what I have at every birthday -- nothing. I know it's immature, but so is my family . . . Lynne

You don't need to have a fasting glucose test. You need to have a fasting INSULIN test. This will tell your endocrinologist if you have an elevated insulin level. If it is high, it means that your cells are becoming "desensitized" to the insulin your pancreas is producing. Therefore, your pancreas has to secrete additional insulin to keep your blood sugar down. That is the mechanism by which Type II diabetes begins.

With regard to PCOS -- I knew that SOMETHING was wrong, because I kept having episodes of some pretty significant pain in my right side, mostly. It would cause me to have to stop & bend over for about 5 minutes, and I was sore on that side for about 2-3 days following. One OB-GYN told me that I had "Chronic appendicitis" and that the only way to take care of it was to have my appendix out, but I didn't have the elevated white count to warrant it. WRONG! It is because the fluid in the cysts is very toxic, and when they rupture, they cause irritation to all the tissues in the peritoneum (inner portion of your abdomen) -- you can potentially develop peritonitis (what people get when their appendix ruptures)

At any rate, you need to get it checked out . . . . I'm tellin' ya, if you've maxed out your ass . . . Take care, Lynne

Hi Guys -- Shirley, I'm glad your husband is doing well -- isn't it amazing what they can do with regard to knee scopes now? Pretty cool. I hope he feels better soon.

O.K. As far as the worm poop goes, we'll probably never KNOW how many it takes, because within two weeks, I kill all the darned things. And let me tell you, I did everything BY THE LETTER. I even lightly sprinkled corn meal over the top, just like the instructions said. And the stupid things still died. So, I'm hoping that decomposing worms (EEEEEWWWWWWWW) are as good a fertilizer as their poop!

Okay -- the poop's out of my court and in someone else's . . . . . . Hugs to you all, Lynne

BTW: If I could do it RIGHT, worms make a lot of "casings"; the also make a lot of "tea" (I'm sure you can figure that one out) There was an elementary school who started using the garbage (food items) from lunch to start a worm farm in a large garbage can. They had so many casings, so much tea, and the worms were so prolific, that they had 6 or 7 large garbage cans within no time. In addition, they sold the tea, sold the casings, and divided and sold the worms to bait shops -- these kids ended up buying all KINDS of stuff for the school -- a brand new playground, I'm talking high-ticket items!

They have 6 or 7 large garbage cans full, and I can't keep from killing 3 different batches of worms. Hmmmf

Beverly, thanks for the compliments! I'm on a mission . . . My husband just made a very good point: he said that someone stated that companies like Proctor & Gamble are so big that they can find out if what their suppliers are providing are gluten-free. His take on it is this (and I think it's a good one, not just because he's my husband : Companies like Proctor & Gamble are so big that they can tell their providers that they ARE going to provide products that are gluten-free.

I thought that was pretty good. And, I'm going to use that on all of my next replies to companies. "Surely, with a company as large as yours, you can demand that your suppliers provide you with nothing but gluten-free materials."

Another dart in my artillary!!!! Onward . . . . . Lynne

I have a similar thread going . . . the Neutrogena folks sent a list of all their gluten-free products. When questioned further, because it says "Wheat free", they responded that the items listed only are guaranteed wheat free -- but not barley, rye or oats. The entire list is on my thread if you want it. Also, Cetaphil products are gluten-free -- both the cleanser and the lotion. Hope this helps . . . Lynne

I haven't had a whole lot of trouble with meds, but a little bit: my generic synthroid contained gluten according to its manufacturer (can't remember which), so my endocrinologist changed it to Name Brand Only because it's gluten-free. The generic Klonopin I was taking for the spasticity I have contained gluten, so I had to change to Name Brand Only on that, as well. Kind of funny that the medicine that I was taking to help the symptoms of what gluten has done to me CONTAINED gluten. I had been given Nexium in the past and according to its manufacturer, it contains gluten. I think those are the only ones . . . my memory is kind of foggy today, so I could have forgotten some . . . .

And from Dove . . . . .

From: "doveusa, comments" <Comments.Doveusa@unilever.com>

To: <bodyworxinc@hotmail.com>

Subject: FW: Dove Information

Date: Wed, 8 Feb 2006 15:55:36 -0500

> Hi,

>

>Thanks for writing!

>

>We do not specifically test our products for the presence of gluten, a

>sticky protein found in some grains such as wheat. Gluten may be present

>in products that contain derivatives of wheat, oat, rye, and barley.

>

>In labeling our products, our company follows the guidelines established

>by the International Nomenclature for Cosmetics; Ingredients (INCI)

>process. Therefore, if we use an ingredient derived from a grain such as

>wheat, oat, rye, and/or barley, those names will appear on the label.

>One common example is "Hydrolyzed Wheat Protein". If you see this on the

>label, the material was derived from wheat, so the product may contain

>gluten.

>

>Thank you for your interest!

>Your friends at Dove

>

>-----Original Message-----

>From: Comments.Doveusa@unilever.com

>[mailto:Comments.Doveusa@unilever.com]

>Sent: Tuesday, February 07, 2006 12:53 AM

>To: doveusa, comments

>Subject: Dove Information

>

>E-mail Address: bodyworxinc@hotmail.com

>First Name: Lynne

>Last Name: Wagner

>Address1: 9210 Old Six Mile Lane

>Address2:

>City: Louisville

>State: KY

>ZIP: 40299

>Daytime Phone Number: Ext:

>Evening Phone Number: Ext:

>UPC Code:

>Manufacturing Code:

>

>Comments: Can you please send me ((via e-mail) a current list of Dove

>products which are gluten-free? Thank you for your help, Lynne Wagner

My response:

Kind of a perky message for a very serious inquiry. What I would like to know is this . . . if you know that labeling state "hydrolyzed wheat protein", I think it would be appropriate for your company to keep a list (Excel spreadsheet, even a Microsoft Word document) of products which contain gluten.

Celiac disease is one manifestation of gluten intolerance, an autoimmune disease. It wreaks hell on the small intestine and bowel. I have Glluten Ataxia -- the antigliadin antibodies which react to gluten cross react with another type of antibody which I produce. The result is that the perkinje cells in my body -- which lie predominantly in the cerebellum of the brain, the retinas and the peripheral nerves -- are destroyed. These cells do not regenerate. I am already in a wheelchair due to late diagnosis, so you see, I can't afford to play Russian Roulette with products, hoping that they will be gluten-free.

With your company producing more and more products -- and I am on your e-mail list to introduce new ones -- I would hope that your company would be more responsible with regard to protecting the health of consumers by providing the information which they need. I can assure you that, until you can tell me that your products are gluten-free, I will discontinue using them -- my neices are going to be thrilled, because I have them all. In addition, I will recommend, on the Celiac forum, that others wait to use your products until they can be assured that they're safe. I will also advise my friends and family of the same. Thank you for your response.

Lynne Ellingsworth-Wagner, PT

I guess the thought of other people seeing their response on the internet made them take a second look at their policy. Hmmmmm......

Rusla -- I think it's great that you're developing your own shampoo! I started making my own lotion, lip balm, bath oil, bath salts, etc. years ago -- before I was diagnosed with gluten intolerance, just because I liked mine better. I never tried soap or shampoo. I think the idea of developing your own make-up is fantastic -- of course, you need to let us know when you start marketing your stuff so we can purchase!

Well, must get working again on my mission . . . . Onward!!!!!!!!!!! . . . . . .

I DON'T understand why people can be so mean. I have been very lucky that my family (mom, dad, sister & kids) have been supportive. What is interesting to me, though, is that birthdays are a HUGE deal for us. It is YOUR day. As supportive as my family has been, I still haven't been able to "partake" during the celebration, because they serve regular cake and ice cream which is questionable for gluten. Then they say "I guess you don't want any." I just shake my head "no". THESE ARE PEOPLE WHO ARE SUPPORTIVE!

Perhaps you can show your mom one of your books about either Celiac or gluten-free food. Maybe if she gets more educated, she'll stop with the "barbs". Good luck to you . . . Lynne

Usually it is what you ingest -- as far as causing a systemic reaction, it needs to be ingested. Gluten molecules are too large to get into your system transdermally. My thought, though, is -- if I put lotion on my face, and I touch my face & put my hand to my mouth, or I get the lotion too close to my lips, or if I put on lipstick that contains gluten, then I'm in trouble. Actually, I was using Aveda lipstick -- and it contains gluten. So here I was putting lipstick on that I liked the taste (it had peppermint oil in it), so I was obviously eating it off during the day -- I know I had to re-apply -- hence, I was continually glutened without knowing it.

My thought with regard to things like shampoo -- what if a parent is washing a child's hair, the shampoo contains gluten, and the child gets a gulp of soapy water? I've accidentally gotten "shampoo water" while I'm showering -- especially when my husband is yelling in to ask me a question and I try to answer! (which I know is stupid, but sometimes I just am . . . )

HERE'S THE BIG NEWS!!!!! PROCTOR & GAMBLE DEEMED ME "WORTHY" OF HAVING INFORMATION REGARDING SOME OF THEIR PRODUCTS!!!! I MUST BE VERY IMPORTANT !!! Here's their reply:

Response (RightNow Administrator) - 02/10/2006 01:13 PM

Hi Lynne,

I'm sorry you're not happy with our reply, but we don't have a list of all P&G

products that are gluten-free. I'll be sure to share your comment with our

management. For reference, below is are some of the products that are

gluten-free. However, if a product you use is not on this list, then a letter

from your doctor will be needed.

Folgers Coffee

All Tide, Gain, Era, Downy and Bounce

Crest Toothpaste

Puffs

Charmin

Bounty

Swiffer

Dawn

Cascade

I hope this information is helpful.

Karen

P&G Team

Here's my response:

Thank you for providing me with information, albeit minimal, with regard to Proctor & Gamble products. I also appreciate the fact that you are contacting management to help them improve their consumer relations -- and to make them aware of the fact that gluten intolerance is larger than most people think. My goal is to ensure that my health, as well as the health of others, is not compromised due to gluten-containing products. I will post this on the forum with the responses from the other companies which I have contacted. Thank you again for the additional information.

Lynne Ellingsworth-Wagner, PT

Holy Mackerel! I don't know where I posted it, but I wrote about my thyroid stuff. I had an elevated TSH, and an enlarged thyroid; I was going to a GREAT endocrinologist who kept it under control with Synthroid. Our insurance changed, and she wasn't on the list, so I switched to an endocrinologist recommended by a friend. He told me that I didn't need to be on Synthroid -- stop taking it. Three months later, I was in the psych unit because I just wanted to die. They did the standard bloodwork -- my TSH was 11.5. Once the psychiatrist there saw it, he told me that I had organic depression, and I needed to find a good endocrinologist. I told him who I was seeing, and he repeated, you need to find a good endocrinologist. I told him who I had been seeing, but she wasn't on my insurance. He told me it was worth the money to pay cash. So I do. Because of what that ##$%^&^%% did, Hashimoto's thyroiditis kicked in big time -- I had a thyroid gland that was 4 1/2 - 5 times the normal size on the left, 3 1/2 - 4 times the normal size on the right. It grew backward, and wrapped behind my trachea, and in the front grew under my breast bone. It was cystic, and some of the cysts were hemorrhagic. They can lead to cancer -- so I had to have the whole thing removed. I'd watch my TSH like a hawk.

With regard to the increased belly fat, get tested for polycystic ovary disease (syndrome). I had a friend who was a Nurse Practitioner. She said -- you've gained weight in your belly -- and you're pear shaped. I told her that I thought that I had just maxed out my ass She said, seriously, you need to be tested for polycystic ovary and you need to have a fasting insulin level done. She was right -- it was kind of freaky. At any rate, it's just something to ask the MD about.