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We had our first support group meeting.  It was a picnic. Abby was able to meet some children her age.  They grilled hamburgers and sausage.  There were about five vendors there to present their foods. We got some great samples, and recipes that each family brought with their food.  It was amazing to me how people connect having never met before. That common bond, just having someone that understands, or gets it. 

There are so many people that have never heard of celiac disease, or if they have heard of it, they do not understand how serious it is.  I want to go and tell moms everywhere, please pay attention to these symptoms.  I do not want another child to be sick for over two years and have to get really sick for the doctors to take it seriously, and then find out what is wrong.  We need support and we need to make people aware. I want to help form a support group with the Family Connection in Columbia SC. I am in the process now. If you know anyone that is looking for a support group please help them get in touch with me by posting a comment below, or call Family Connections in SC they will help you get connected. 

We had another successful cookout the next day even with some ungluten free food around.  My daughter looked at the dessert table and saw those oh so beautiful pink  icing sugar cookies. I said oh, honey you cannot eat anything over there. I brought your dessert. I expected to get a drama cry, but thankfully she said oh, ok, mommy and went off to play with her friends.  I count that as a success story for us. She may be starting to get it . I know there will be setbacks but we are ready for them.   My daughter has designed some really cute t-shirts. A little girl  with a cape.  logo says "Super Celiac Girl... fighting gluten everywhere", and then there is a boy says the same but Celiac boy.  There other one is a toaster and it says keep your crumbs out of my toaster.

It's not just Gluten

For me, it's not just gluten! I have adverse digestive responses to yeast, vinegar and dairy as well. For 5 years I have been living a life free of these "toxins" to my body. It is quite challenging to avoid both the gluten & yeast (they so often come hand in hand). Most gluten free breads, pretzels and crackers have yeast! In honesty, they feeding tube has made "eating" much easier. However, my wish is to begin to eat, again, and get off this tube (currently I am identified as a "lifetime" patient). I'm only 39!! Currently, I do consume a few things: liquid vitamin supplements, liquid protein drinks, fruits and occasionally a bite or two of whatever my husband is having for dinner. The liquid foundations truly help me through the daytime, so that I may only run the pump during the evenings. It's been quite "freeing" that past 3 months to not be on the feeding tube 20/7.

Everlasting Hope

As I have been struggling with health issues for nearly 6 years, I have lost and gained hope so many different times.
My chronic states of malnutrition and starvation have taken quite a toll on my body. I suffer from chronic pancreatitis, a heart condition that leaves me with dangerously LOW blood pressure and a likeliness of fainting, my adrenal glands are insufficient, my liver damaged and my thyroid underactive. Through it all I have had several extended hospitalizations, depression and hope. So many doctors and non-traditionals have made me promises. However, it is the promise one makes to oneself that is most important. Mine, "Don't lose Hope!" Even during the worst of days when I would not be able to get out of bed and wanted it all to just end, I truly never lost hope! I am here to tell you that it is soooo important you hold on. Because, one day when you're not even looking and hardly paying attention, something will come to you and change your life.
There have been a few major food recall's in the gluten-free community lately. In case you missed any of them, check out the list below.
  1. On Friday April 2nd, 2010, Glutino Food Group of Lawrence, Massachusetts recalled their "Raisin Bread" due to undisclosed "egg" in the ingredients.
  2. Friday April 2nd, 2010, Zatarain's Recalled their,  "Original Dirty Rice Mix Package" due to unlabeled wheat and barley ingredients.The package comes in 8 oz size and has a UPC code 7142909535 and a "BEST BY" date of JAN 19 12H.
  3. April 7th, 2010, McCormick & Company, Incorporated recalled, "McCormick Fajitas Seasoning Mix" due to undeclared "milk & wheat" in the ingredients. McCormick distributes to grocery stores nationally. The product comes in a 1.12-oz pouch labeled with a UPC code 5210002121 and “BEST BY” dates of JAN 16 12 AH and JAN 16 12 CH. The package contains the wrong product. Consumers may call (800) 632-5847 with questions or to request a replacement or full refund.

Why do the nurses at the pediatrician's office have to be so rude?  I love our doctor but her nurse stinks. She is rude and unconcerned. She always makes me feel like I am an over reacting mom. I honestly can't stand her today.  I need to go and pray and it's a good thing we don't go in to see her until tomorrow, because I will have time to cool down. I just have had it with the run around with my daughter. It took over 2 years to get to where we are now, and you would think that they would jump through hoops and not make me jump through hoops to get something done. One of their doctors misdiagnosed her about a year ago, and she ended up in the hospital so sick with acute colitis. Stop acting as if this is not real or just a little allergy! That is what I want to say to her. She needs labs drawn to see what she is lacking. I know that she needs this so why do I have to come in there to let you look at her in order to get it done? She has not gained her weight back since last June when she was misdiagnosed, and now since we have her on this diet she has lost another 1/2  lb.--for a total of 4.5 lbs. She is so tiny she is 7 and weights 42.5 lbs.! That should speak for itself--are they scared to mess up again or do they want that doctor's visit fee? Ugggggh I am so upset today. I am having a feel bad day. It has hit me today that she has this for life, it's not going away, she won't out grow it like most food allergies. It's here and we need to fight it for life.  I have met a woman who's daughter was diagnosed at age 3 and she is 13, she is also a nurse, so she has helped me a lot in what to ask for at the doctor's office. I hope tomorrow  I have a more upbeat blog. I know I can do all things through Christ who gives me strength. 
Robin
Dr. Peter Green and the Celiac Disease Center (CDC) at Columbia University is the only center in the US providing comprehensive medical care and nutritional consulting for adults and pediatrics with celiac disease. The cure: a gluten free diet. The CDC diagnoses and treats over 2000 patients annually. Children’s author Tina Turbin has been eating gluten free for about nine years, and has been actively researching, writing and promoting the need for increased awareness of celiac disease as well as gluten intolerance and gluten sensitivity.

Elisabeth Hasselbeck has released her book The G Free Diet after her many years of trial and error with her body in her attempt to feel well. Dr. Peter Green helped put her search to an end. She too had celiac disease.

So why is gluten free food popping up in stores everywhere?  Why are people requesting gluten free dishes at their local restaurants?  These days you will find gluten free products in your stores and will be served a gluten free meal by a well informed chef.

Celiac disease affects approximately one out of every 100 individuals – (1%) in the USA. Often people are treated for an autoimmune condition before ever being diagnosed with celiac disease.

Celiac disease is vastly different than gluten sensitivity or gluten intolerance. It is not clear how common the latter is but it is known that gluten sensitivity has no immediate effects like celiac and does not damage the villi in the small intestines, as celiac disease does, yet it can cause GI disturbances.

There are specific tests needed to determine if you are celiac or gluten sensitive. If one tests positive for either, a gluten free diet will be required to assist one for improved health. Now we have gene testing to help determine genetic predisposition as well.

I have gone to great lengths to ensure that others are well informed on how to go about getting tested, where to go for help, recipes, and additional resources – see my bio for more info about me.

As a children’s author, researcher and through numerous radio interviews, I hope to help raise awareness of these broad issues: gluten free food, celiac disease and gluten free sensitivity.
I recently learned that Triumph Dining has made an iPod/iPhone application based on their wonderful "Gluten-Free Grocery Shopping Guide." I thought, "How Wonderful!" and promptly bought it from the iTunes.com web site. Now I have this wonderful reference with me at the grocery store without having to lug a book along.

But, you know what? Now that I've been gluten-free for 2 years, I pretty much know what's gluten free and what's not at my grocery store. And what I would REALLY like is for the people at Triumph Dining to convert their wonderful "Gluten-Free Restaurant Guide" to an iPod application. I have had that book for 2 years, and I STILL refer to it any time I want to eat out! And it is especially useful when traveling! The few iPod applications currently at iTunes for gluten-free restaurant dining have only a small fraction of the restaurant locations that are in Triumph's book. So I wrote to the people at Triumph Dining asking if/when they plan to convert that one to an iPod/iPhone application.

What they replied was that they certainly will consider it if they get more people writing in requesting it. So here's what I suggest. If you have an iPod or iPhone, and want the Triumph Gluten-Free Restaurant Guide handily available on your nifty device, then write to the kind folks at Triumph Dining and tell them you want such an app. The link to their email is:
http://www.triumphdining.com/glutenfree/contact.php.
If I only knew I had celiac disease long before I was finally diagnosed.  Now suffering celiac spru, gastroparesis and severe pancreatic insufficiency, I will never regain the full use of my pancreas.

I am in the process of learning if the celiac or Lyme Disease was the biggest culprit in damage to my Pancreas.  I'll keep you posted if anyone wants to know.   My sons have been dianosed with Lyme and with the information on this site I've learned my youngest (16) may also have celiac disease.  Why it's taken his whole life for doctors to get it right I will never know but we're here now and gluten free looks to be in his future too.

The article here relating celiac with pancreas issues is very interesting to me and is something I must look into for my son's welfare.  Thanks for information about what to look for in juvenile's!
Blessings,
Trish

Since my husband is forced to be on a gluten free diet eating out has been a major issue for him. My family does a fair amount of eating out since both my husband and I work full time. At the end of day cooking a meal is the last thing on my mind. The problem for my husband is that most of his favorite restaurants have good amount of gluten dishes that he absolutely loves. Because of this eating out problem, I force myself to cook at home more often than usual and I have to constantly remind myself to not use any gluten. It is a big adjustment but once you get into the habit it is not that bad.

So what is the good and and bad of not being able to eat out?

The good:

  1. Save money - Since you are not paying for restaurant food and service; Often times, even though the restaurant may serve gluten-free items, they tend to be a little bit more expensive because the cost of the ingredients are often more expensive.
  2. Stay Healthy - By cooking at home, you are more aware of the ingredients that are involved making a dish. Often times, you can't really know what was in the dish even though it might seem gluten-free. 
  3. Be a better Cook - I have been doing a lot of research on gluten-free cooking and exploring and experimenting different recipes. By doing that, I am actually learning to be a better cook and learn to cook more variety. It's always a good thing.

The Bad:

  1. Cost/Money - I know I mentioned above that 'Save Money' is a good thing. But the initial phase of getting the gluten-free ingredients does cost quite a bit of money. Imagine spends $20 on a bag of Xantham gum or buying different type of flours for example. The ingredient cost quite a bit, but they do last awhile.
  2. Time Consuming - Even though I enjoy cooking now, however, it is time consuming especially after a long day of work and need to prepare a meal that is not so much 'Out of the pantry'.
  3. Shopping Takes Longer - Often times you will need to go to health food store to get the gluten-free ingredients. Luckily, most of the larger supermarkets carry gluten-free items now. If you are not shopping in the gluten-free aisle, you will have to read every single label and make sure that there is no known and/or hidden gluten in it. That will cost some time.
  4. Bye Bye Corona - This is extremely hard for my husband because he loves beer and Corona is his favorite. He is not a wine drinker so it's not easy for him to just switch. It was like the end of world when he found out that he could not have beer. He tried some gluten-free beer, it is just not the same. All beers are not created equal, after all.

Sometimes it is the idea of not being able to just simply go out and have a meal that is difficult for a lot of people who have celiac disease. But I think as long as you are aware and smart about what you order in a restaurant, it will get easier.

Gluten-Free Frustration!

I know I have been following this diet for 2 years now, but it still seems like it hasn't been any easier to follow. I still have the  temptations, cravings and I feel like there is nothing for me to eat. My doctor has told me to stay away from greens and the gluten because not only do I have celiac disease, but I now have IBS. They go great together! (sarcasm) Some days I feel like there is nothing for me to eat. I am the only one in my family that has to follow this diet and they never quite understand how to cook for me. So for this past holiday I ended up with some olives, pickles, turkey and mashed potatoes! I guess I don't have to worry about that 5 lbs over the holidays!

Though I know it sounds like I'm complaining, I just wonder how do you go about repeatedly telling a person what you can and cannot eat with out getting so frustrated every time? The worst is when you have to go through a fast food place and they look at you like your crazy because you say "Sorry there is nothing for me to eat here!." I guess Celiac disease has more to it then not only being able to eat much! Frustration...
Wow,  I cannot believe that it is time to move onto 2010.  Where the heck did 2009 go?  What a year.  I personally am glad to see it go and good riddance to it.  It was a year of 3 brain surgeries for me and a celiac diagnosis for my husband.  Honestly, I think I won out in the deal.  The holidays have been hard in that it is difficult to replace all the g-full food.  And let's be honest, my husband did not try too hard.  He has fallen off the proverbial wagon big time.  But with the new year comes new resolutions to fail at...I mean to try.  What will yours be?  Mine, the same 10 pounds to loose from last year.  Only I think a few friends have come to live with those 10. And as always to exercise.  But my resolution for my hubby (he is not allowed to make his own LOL) is to be more g-free in the new year.  Hope you all have a prosperous year and free of trauma!

It has been a busy decade for celiac disease. I even think non-celiacs would agree we heard more about celiac disease and the gluten-free diet in the last 10 years than ever before! Including me. We had it in our family for 40 years before I had any idea this disease even existed – with my daughter Emma’s diagnosis in 2000.

With the end of the decade now just days away, I got to wondering what were some of the more significant moments that had an impact on celiac disease. While I certainly have my own thoughts on this, I felt like this needed responses from the greater celiac community.

And you delivered! Starting on December 16th, I opened the unscientific survey asking “What do you think has had the greatest impact on the celiac community in the last ten years?” 94 people responded with their top three answers to my survey which closed on December 27th. Your answers and comments are very interesting. So here are two of the top three vote-getters…

3rd choice for top impact on the celiac community in the last decade: More selection at restaurants

61 percent of respondents chose dining out as their third choice in this survey. It is true. This boom has made eating out with celiac disease so much easier! Really with the exception of Outback Steakhouse’s nationwide gluten-free menu (it’s had the gluten-free menu for as long as I can remember), most other restaurants didn’t even venture into the gluten-free options until about 2006.

Then with the advent of the websites like glutenfreeregistry.com, celiachandbook.com, glutenfreeonthego.com and glutenfreetravelsite.com we all are now able to go on long-distance trips (or even just a local date-night) and have a starting point with which to find a gluten-free meal at a restaurant. One respondent commented, “Awareness at restaurants and with chefs has grown quite a bit. Gluten-free menus are a great way to start a conversation at the table and show others that it can be easy to fulfill a ‘special needs’ diet.” A parent reflected on the change in the last ten years…including finding a place “where we can go to eat out and eat safely.”

Admittedly, there is work to be done. While some restaurants really have a solid understanding of the diet and cross contamination issues, others do not. But in an interview I did with Sheila Weiss the National Restaurant Association consultant on food and nutrition policy earlier this year, she mentioned the interest restaurateurs and chefs have in pleasing patrons with special requests. “We strongly encourage customers to explain their food intolerances to their server so that the appropriate staff member can be notified in order to accommodate the special requests. Restaurants are happy to work with the customer to find menu items that work for a gluten-intolerant guest,” Weiss said. “The lines of communication are very important so that a restaurant can ensure a safe meal for their food-intolerant guest from start to finish. This personalized attention is of utmost importance to all parties involved.”

2nd choice for top impact on the celiac community in the last decade:
A tie: celebrities with ties to celiac and blogging/social networking

Respondents chose these two categories for their #2 selection 50% of the time in the survey.

Celebrities with ties to celiac disease started with Rich Gannon who was an NFL quarterback when his daughter Danielle was diagnosed with celiac disease. He and his wife Shelley have been very active in raising awareness over the last decade. Most recently the additions of Heidi Collins (CNN anchor) and Elisabeth Hasselbeck (The View co-host and author of The G-Free Diet) have really added to the awareness. In some cases it seems too bad that it takes a public figure to get people interested in a cause, but it has helped here. I am thankful that they’ve used their celebrity to bring awareness to this cause.

Blogging and social networking about celiac disease seems to be the current equivalent to a support group. It is so easy to throw a question on Twitter and get several responses within a few hours (or even minutes). I believe bloggers have made people with this disease not feel so isolated not just because there are many out there, but many of the stories they are telling are very relatable.

One respondent acknowledged the importance of bloggers and social networking, but that person worries that most of the impact has been negative. “[Blogs] allow all the kooks and nutcases free rein to promulgate their belief systems as if they were backed by solid scientific research.” This is an area in which readers need to be careful. I hope that when people start searching for celiac-related blogs, they can eventually deduce which ones are right for them. Some blogs only focus on gluten-free cooking, others are more about the celiac lifestyle. This blog, thesavvyceliac.com, is about education, research and lifestyle. Either way there must be hundreds of us out there…I would like to think that we are all trying to achieve one goal – raising awareness as accurately and honestly as we can.

The top spot will be posted on Tuesday!

For years I’ve only purchased big brand names of ibuprofen and cough/cold medicine for my gluten-free daughter, because I couldn’t guarantee the generic, store brand version sitting right next to the big name brand  (and  about a third less in cost) was gluten-free.  Now it appears that’s about to change — in a bold way.

In a news release Monday, the Perrigo company says it will begin labeling gluten-free products appropriately beginning in January of 2010!  Wow!  Those Sunday 2:00 a.m. trips to my local 24-hour drug or grocery store looking for a pain reliever for my feverish child may not be so bad.  Now I’ll actually be able to find out a medicine’s gluten-free status — right there in aisle 9!  “Now, consumers will be able to identify whether a Perrigo-supplied product is “gluten-free” simply by reading the product label,” the Perrigo news release said.

Perrigo is the “world’s largest manufacturer of OTC [over-the-counter] pharmaceutical products for the store brand market.” It certainly is showing it’s progressive side by not only adding the gluten-free label, but also putting together a plan to ensure gluten-free claim on the medicines is true; which is a bit reassuring:

“To support the gluten-free labeling initiative, Perrigo has instituted a gluten-free assurance program. Perrigo’s program is based on the acceptable thresholds of gluten (less than 20 parts per million) identified by the FDA for the food industry. It is comprised of a gluten testing methodology for raw materials and products, as well as ongoing quality assurance for ingredient and formula changes.”

The Perrigo website doesn’t list which companies it prepares store-brand OTC medicines for, but it did briefly make mention of WalMart, Walgreens and Kroger as big name examples on one of the company’s web pages.  So you’ll want to keep your eyes peeled at your local store.

But in the meantime, this appears to be the list of generics they create. I can’t wait to check them out!

Recently, noticing that the Mt. Olive pickles contain flavoring, or natural flavoring, I wrote a letter asking whether their flavoring contains any derivatives of rye or barley, even if it doesn't contain any wheat.

Here's the letter I got back from them:

__________________________________________

Hallie, thanks for your note. Our QC folks followed up with our flavorings supplier, and our flavorings do not contain rye, barley or any of their derivatives.

 

Thanks for contacting us.

 

 

Lynn Williams

Community Relations

Mt. Olive Pickle Company, Inc.

Corner of Cucumber & Vine

One Cucumber Boulevard / P.O. Box 609

Mount Olive, NC 28365

800.672.5041, ext. 3628

_______________________________________________


So I will continue enjoying the Mt. Olive Pickles!


I must say that I was not at all surprised by the decision made on Thursday by U.S. District Court Judge Joseph Tauro to dismiss a plagiarism lawsuit that was filed by Susan Hassett (author of Living With Celiac Disease) against  Elisabeth Hasselbeck (author of The G-Free Diet: A Gluten-Free Survival Guide and star of the television show "The View"). I predicted such an outcome in my blog post: Did Elisabeth Hasselbeck Commit Plagiarism in The G-Free Diet?

Apparently the lawsuit was dismissed after Hassett’s attorney, Richard Cunha, failed to file certain paperwork in a timely manner.

According to Bostonherald.com:
"It’s unclear why Hassett didn’t pursue the case. Her lawyer, Richard Cunha of Swansea, yesterday told the Herald, 'I can talk about that,' then hung up the phone."
Just for the record I never received a response from Hassett (I emailed her directly) regarding her book's use of my site's Safe & Forbidden Lists page from May 30, 1997. She used an almost identical copy of my copyrighted list without permission or proper citation. I asked that she correct this in future editions of her book, but she has ignored my request.


Source:
Judge tosses plagiarism suit vs. “View” star Elisabeth Hasselbeck
I'm writing a book about the bladder, and one of the points I came across in my research, perhaps not too surprisingly, is a link between gluten intolerance and/or celiac disease and chronic prostatitis in men.  I've also run across a comment posted regarding this link on the gluten-free forum on this site, but I really want to learn more about this link to document it for the book.  So, what I'm wondering, and asking, is if anyone would be willing to share their story with me?  My guess is that chronic prostatitis often exists concurrently with other symptoms more typical of gluten reactions, and that going on a gluten free diet helps those symptoms, with the added, although unexpected, benefit on the prostate.  Can anyone help me out?  All confidentiality will be protected.
Hello Everyone!  I was diagnosed with celiac disease about six months ago or so.  I was doing well.  I felt a lot better right away.  Then in August I messed up a number of times by eating out.  Now I have been very strict.  Although still a learning curve with hidden gluten/cross contamination.  My number went from 37 to 10. 

 My thing is I have been getting very nauseous for about a month now.  My GI doc thinks it is because I still have gluten in my system (the number being 10 still).  Prior to being diagnosed nausea wasn't the problem.  It was bloating, cramps, bowel issues, migraines (side note: migraines are gone!).  But now I am nauseous daily.  I had bloodwork and an ultrasound done for gall stones, liver and pancreas and all was fine.  It doesn't seem to matter what I eat.  It is usually after lunch, and I normally eat salad, meat and veggies, banana and almonds.   Today I had no lunch and had coffee with milk and I suffering bad with nausea, sweating and headaches.  I don't seem to have trouble with milk but maybe I do.

I am just wondering what other celiacs would have to say.  I am committed to doing this, I just wish I would start feeling better. Any advice is appreciated.

Good Morning Everyone,
It has been sometime since I have checked in and for that I apologize.   The gluten-free diet is going well but a little boring.  I did discover a new product (well new to me).  I was shopping at my local Redners a few weeks back.  I was picking up the cookies my hubby likes.  upon my arrival I noticed 2 men standing right in front of my (LOL) gluten free section of the aisle.  I say mine because I never see anyone else standing there. I became very curious as to why they were there.  As it turned out, Redners was increasing their line of gluten-free items and in doing so now carries Dr. Schar Products. I spoke at length to the sales rep.  The company is European and he informed me that across the pond they are more concerned than the US in getting this stuff to taste good.  I was very excited.  The pasta was fantastic and my hubby loves the shortbread cookies.  Check it out and let me know if you try any of the other products.  Happy Eating!
Last weekend all 5 of us went to Hershey Park. What an experience to have with a celiac! We did search the official website for Hershey Park and was happy to see they offered a page listing all the ingredients of the food at the park.  There was one place that had gluten free hamburger buns.  Over all we did have a good time but worrying about what a person can eat and be at an amusement park is difficult.  Mostly because the one of the best parts to being there is munching on the junk food.  If we go again I will call and see if there is something we can do that would allow us to bring in his food since their offering was so little.  Have a great day and happy eating.
Good Morning All!  Well as good as it can be considering it is Monday.  I have to tell you all how important  a great support system is when it comes to celiac disease.  As the only cook in my house for my husband I cannot tell you what a blessing it is to have friends and family who help you with this chore of love.  We had a party to attend on Saturday and my friend went out of her way (it was her daughter's 13th b-day party) to make my husband the best pasta salad he has had in a while.  We all ate it.  Then on Sunday, my mom made meatloaf and because she did not have enough gluten free breadcrumbs she made some to use and was even very careful how she seasoned and toasted the bread crumbs. They used them to make my husband his own meatloaf.  With working full time it is hard to keep the menu fresh during the week when you are cooking regular food.  But we all know when a specific diet enters the picture it is even harder.  So to have people around you that really care to help keep your loved ones safe is the best gift to get.  Thanks to all my wonderful friends and family, you ROCK!
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