Author Topic: Please read this if you are new here  (Read 16827 times)

Offline CarolM

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Re: Please read this if you are new here
« Reply #30 on: April 02, 2008, 04:57:12 PM »
cookie,

We all know how hard it is to go GF at the beginning and we're happy to help you make the adjustments.  Steve has put together a great site here.  When I was first diagnosed in 2002, the information wasn't nearly so easy to find.  I wish I'd been able to find more support for that first year, it would have saved me a lot of mistakes and discomfort.  Welcome!

Carol
:)  Gluten-Free since January 5, 2002  :)

Offline jaysmommy

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Re: Please read this if you are new here
« Reply #31 on: May 31, 2008, 05:59:28 AM »
Hello! I am new to the site, had seen it a couple times but finally decided to join up since it seems we are GF for the long haul.  :-D My son has been having some issues for a while now, had a blood test, EGD and allergy testing with negative results. However, he was losing weight, so his GI decided to "try" going GF. It's not easy, especially since he will occasionally get something with gluten in it at daycare.....it is getting better though. We've been GF since January (since he was 19 months old), and I can definitely see a difference in his stools.....

At his appointment in April he had gained some weight back, so we are encouraged. Our GI wants to keep him GF until August and might do another EGD to see if there is any difference. It's nice to know that there are sites like this out there for support. Keep up the great work!
April

Tommi- 3/18/03
Jay- 6/9/06

Offline Irish Daveyboy

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Re: Please read this if you are new here
« Reply #32 on: June 20, 2008, 12:57:44 PM »
My name is David I’m 60 yrs old and was diagnosed Coeliac (Celiac) when I was 57.

I didn’t know what was happening to me at the time I was so sick I had lost 56 pounds in weight in the space of three months,
Constant Vomiting and Diarrhoea had left me weak and exhausted, I thought I was going to die.
.
After many doctors visits, and a long stint on a waiting list to see a Specialist, I couldn’t wait any longer (scheduled  appointment was 6 months away)

I was afraid that at the rate I was losing weight  I’d be dead before I got to see the Specialist.
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So the family used every contact they had at their disposal, I spoke to all the local politicians’ lobbied doctors and councillors.
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Eventually I got to see the specialist, had blood test and an Endoscophy. The results came back positive I had Coeliac/Celiac Disease.
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I was later to discover that my cessation of smoking after about 40+ yrs triggered the onset of Adult Coeliac Disease.
.
"smoking prevents the onset of Adult Celiac Disease"






Offline Irish Daveyboy

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Re: Please read this if you are new here
« Reply #33 on: June 20, 2008, 01:09:54 PM »
My name is David I’m 60 yrs old and was diagnosed Coeliac (Celiac) when I was 57.

.
Continuation (1):
.
I met a Dietician and they suggested a Gluten Free Diet for Life, no regular bread, pasta, cakes, biscuits (cookies).
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No Fast Food ( Fish and chips, Curries, Pizza) also I had to be careful about ‘Gluten’ in Products.
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So I  tried:
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Gluten Free Bread (Tasted like Saw-Dust)
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Gluten Free Cakes (loaded with sugar to disguise the gritty aftertaste)
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Gluten Free pizza Bases (I’m sure cardboard boxes would taste better)
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That did it,….I knew I couldn’t hack it!  having to eat all that rubbish was
a fate worse than death.

So I had to change the way I lived  OR   just live on Veg, Meat, Fish and Nuts.

The thought of never having any sort of goodie again, drove me to do something about it.
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I was at a loss, I could just barely cook, baking was way out of my league, I literally didn’t have a clue!

So I set about teaching myself, I read a lot of recipe books (regular and GF) and started to watch the food channels on TV
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Most GF Recipe books used so many different types and mixes of flours that it was overwhelming.

I did try in the beginning to use their flour mixes, but found it way to costly and time consuming,

at one stage I had four flour bins in my kitchen with different flour mixes.
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Having tried all the usual flours available I found that, when they were used alone they left a lot to be desired, there was something definitely lacking.

They were too dry, crumbly, gritty and were only edible if toasted and disguised with butter and jam or something with a strong flavour spread on it, So I set about creating my own recipes 'from scratch', using readily available vetted GF flours and ingredients. that were recommended The Coeliac Society of Ireland.
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I tried using the most popular gluten free flour for baking, but was not tolerant to Codex that was often contained in products described as Gluten Free.
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" Codex Alimentarius"

« Last Edit: June 24, 2008, 02:32:31 AM by Irish Daveyboy »

Offline Irish Daveyboy

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Re: Please read this if you are new here
« Reply #34 on: June 20, 2008, 01:25:58 PM »
My name is David I’m 60 yrs old and was diagnosed Coeliac (Celiac) when I was 57.

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Continuation (2):
.
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So now after a lot of trial, error and experimentation.

I can bake near normal bread that you can eat happily without anything spread on it .
Bet you can't say that about commercially available GF bread!

Cakes are indistinguishable from the real thing so moist and tasty that Non-Coeliacs can't tell the difference   

Pizza bases that would pass for takeouts from any Pizzeria and biscuits (cookies) that taste real and crisp 
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My bread has lasted for about 4 - 5 days in an air-tight container at room temperature.
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Some of my cakes (because of butter and alcohol) have lasted for more than 3 weeks also stored at room temperature. 
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Cookies retain their crispness and don't go soggy once stored in a container.
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Acting as Guinea Pig for my own creations means that I’ve put on weight, but who cares, the goodies taste great and I can bake….Yippie!!
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I feel so sorry for people who can’t or don’t want to bake and have to rely on commercially available Gluten Free Goodies,
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Boy you’ll  NEVER   know what your missing.
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LATEST NEWS as of June 2008.
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Recently I was called back for a follow-up OGD + Colonoscopy as it was approaching 3 years since my diagnosis.
I went through the usual procedure of clearing out the system before the OGD + Colonoscopy, I wasn't too amused at the thoughts
of drinking 3 Litres of 'Kleen Prep' mixture in the space of 2 hours
(I shudder just thinking about it)
it is reminiscent of drinking the water they wash the fish boxes out with at Billings Gate UK. YUK!
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Having properly prep'd myself i set of for the hospital in the twilight (about 7am), I was admitted into the day ward and got
ready for the anesthetic etc.
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Upon awakening i was offered the usual cup of tea (I had brought my own GF bread), as I was relaxing the doctors came to visit
and informed me that they had found a large 'Polyp' and were keeping me in until the results came back from the lab!
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Next day the doctors said I could go home that the 'Polyp' was Benign, an appointment was made to see the Consultant in 3 weeks.
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Finally the appointment came around and I attended, the Consultant told me that the 'Polyp' was benign and is called an Adenoma, these are nearly always benign but can become cancerous if not removed.
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(it just goes to prove the importance of follow-up investigations)
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Anyway to keep monitoring the situation, it was suggested that I have further Colonoscopies at 3 month intervals.
I'm not exactly 'over the moon' at that thought!, but it's good to know I'm getting screened.
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Coeliacs over 50 are more prone to Polyps (adenoma's) than any other age group.
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I apologise for the lengthy Post, but I feel it is important,
Best Regards,
David
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Check out the info on Adenoma's
.
"Adenoma"


« Last Edit: June 24, 2008, 02:33:09 AM by Irish Daveyboy »

Offline the sensible celiac

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Re: Please read this if you are new here
« Reply #35 on: June 20, 2008, 01:36:07 PM »
Irish Daveyboy, we are the same age.  I was diagnosed when I was 49, so I've had lots of time to get used to the diet.

I just wanted to say how much I appreciate your contributions here, we never really know how many people we might be helping because many people read but do not reply.  I figure each comment might represent the opinions of a hundred people.  So, on behalf of 100 anonymous people affected by celiac disease, thanks!

Offline rinne

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Re: Please read this if you are new here
« Reply #36 on: January 30, 2009, 05:51:41 AM »
Hello,

I decided to register this morning after discovering this site through your post on the Celiac.com site, actually it wasn't simply discovering this site it was also discovering that your posts and mine had been deleted from the Celiac.com site.

If you read through that thread now it is definitely promoting those enzymes.  There is even a post lauding them because their site says it is not for Celiacs!

Before I invest a lot of energy in this site I want to be clear that I am on the Specific Carbohydrate Diet.  I have learned that this diet was the diet prescribed for Celiacs prior to the 1950's and that it worked, the gluten free diet appears to work for about 80% of Celiacs.  If this is a site where there is a problem with supporting and promoting this diet as a valuable alternative to the gluten free then I would appreciate knowing that now.

Thank you for your post to the Celiac.com site, it provided me with valuable information.  I doubt that I will continue to post there after this.  I hope this is a site I may. :-)
« Last Edit: January 30, 2009, 07:53:14 AM by rinne »

Offline the sensible celiac

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Re: Please read this if you are new here
« Reply #37 on: January 30, 2009, 07:21:10 AM »
Before I invest a lot of energy in this site I want to be clear that I am on the Specific Carbohydrate Diet.  I have learned that this diet was the diet prescribed for Celiacs prior to the 1950's and that it worked, the gluten free diet appears to work for about 80% of Celiacs.  If this is a site where there is a problem with supporting and promoting this diet as a valuable alternative to the gluten free then I would appreciate knowing that now.

Hi Rinne, welcome to the forum.

I'm puzzled by what you are saying about using the Specific Carbohydrate Diet as an alternative to the gluten free diet.  It seems that medical science has developed a fairly detailed understanding of what it is that triggers the autoimmune reaction in people with celiac disease.

To my way of thinking there can be no doubt that people who actually do have celiac disease must eat gluten free. The evidence to support this is overwhelming.

On the other hand I'm not clear on the details of the Specific Carbohydrate Diet so I don't want to jump to any conclusions about that, is it a subset of the GF diet?  I mean does it perhaps also ban sources of gluten but go further with additional requirements?

Please feel free to start a new topic on the subject.  If you say something that other people disagree with they can always say that they disagree.  It's not my  intention to be dogmatic, you won't be punished if we disagree :)  I think reasonable people can discuss different points of view and let everyone reach their own conclusions.

In 11 years of being GF, while also obviously getting 11 years older, I've noticed that I do much better if I avoid or minimize foods that are mostly just carbohydrates without much fat or protein.

Offline rinne

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Re: Please read this if you are new here
« Reply #38 on: January 30, 2009, 07:26:38 AM »
Hi, yes the SCD is strictly gluten free and I will start a thread on it.  Thanks.

Offline BillButt

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Re: Please read this if you are new here
« Reply #39 on: February 13, 2009, 05:33:10 PM »
Hello,
My name is Bill.  I was diagnosed yesterday with CD and am happy to finally be able to eat and keep things down.  I was lucky enough to have a supervisor who has CD and she told me to get to the doctors and what to ask for in the way of blood tests.  She even provided me with a "CARE" package of GF products to try.  I must say I felt better within a day or two.  I have been gluten free since Monday the ninth of Feb.  and am so suprised to feel like I have been on another planet for the last two to three months.  This is such a strange feeling! It is like I have away from my life since Thanksgiving. 
I look forward to all the information this has to offer.
Thank you for your time.
Bill


Offline Becky

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Re: Please read this if you are new here
« Reply #40 on: September 20, 2009, 07:22:46 AM »
Hello :)

I'm Becky, I'm 22 and I'm from Liverpool UK.  Just recently been diagnosed with coeliacs in July and I am still waiting to see a dietitan, I've had no help from the hospital whatsoever.  I found a great book though (Living Gluten Free for Dummies) and with that I'm getting along alright.  I'm excited to talk to people with coeliacs on here as it seems that I'm the only one in the whole of the Merseyside area lol so thanks for the site.  :)

Offline the sensible celiac

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Re: Please read this if you are new here
« Reply #41 on: September 20, 2009, 08:48:43 AM »
Hello :)

I'm Becky, I'm 22 and I'm from Liverpool UK.  Just recently been diagnosed with coeliacs in July and I am still waiting to see a dietitan, I've had no help from the hospital whatsoever.  I found a great book though (Living Gluten Free for Dummies) and with that I'm getting along alright.  I'm excited to talk to people with coeliacs on here as it seems that I'm the only one in the whole of the Merseyside area lol so thanks for the site.  :)


Hi Becky, welcome.  I've visited the UK since my diagnosis and found that gluten free food items are easier to find there.  You may even be able to get your doctor to write you a prescription for gluten free food and get discounts at your local chemist based on a NHS subsidy of the extra cost of GF food.

Another book I think is absolutely wonderful for newly diagnosed folks is "The Gluten-Free Nutrition Guide" by Tricia Thompson.  It is all facts with no myths and it is easy to read and understand. The author approaches the subject with a healthy respect for science and research.

Don't hesitate to start a new topic with any questions, issues or ideas about how we can help you over this difficult adjustment.  It really does get much easier after a while.

Steve

Offline ChefAlison

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Re: Please read this if you are new here
« Reply #42 on: December 28, 2009, 05:16:27 PM »
Hi all! This is my first time to post to this site. I'm very happy to find this, and get more education on living a gluten free life! I have not been formally diagnosed with Celiac Disease, but was having a lot of the typical issues -- IBS, nausea, fatigue, brain fog. It took awhile, but once I eliminated gluten from my life, I started to feel better and better and all those physical symptoms went away. I tested going off a gf diet a few times, because I had to prove to myself that I did indeed have a gluten intolerance.

I am looking forward to reading everyone's posts!

By the way, I also read the book that Becky recommended (Living Gluten Free for Dummies) and found it extremely helpful.

Offline the sensible celiac

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Re: Please read this if you are new here
« Reply #43 on: December 28, 2009, 06:11:10 PM »
Welcome ChefAlison,

I'm glad the GF diet is helping you, good work figuring it out on your own.

Offline Beamer01

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Re: Please read this if you are new here
« Reply #44 on: December 30, 2010, 08:08:04 PM »
Hi, my name is Kim and I'm 54 years old - I am a new Celiac, diagnosed about a month ago. I am also a Type I diabetic. Was very sick (I suspect for years), as I'm sure everyone who is writing here is very familiar with.... As I am used to a pretty restrictive diet, the transition to gluten free is not a scary prospect for me and I find the diet pretty straight forward.  I am still in the stage of gathering information. Have removed all gluten filled products and am in the process of replacing utensils, toasters, cooking wares, etc.

Having said all that, my first blood test after my biopsy was not great. I suspect my initial downfall was not knowing to replace kitchen ware, disinfecting silverware drawers and that baking powder was not something I should be using off the shelf. Reading the comments I can see it will take some time to heal and get on track. So I thank you for helping me see that I am not totally inept at this new life style!!!

I will be checking in faithfully and hope to gain more insight into the "hidden" traps that you all have discovered. I'll have questions and I am glad now in a better place to get answers!! Thanks