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koch

By koch
in Coping with Celiac Disease

Recommended Posts

koch Newbie
koch
Posted

I was dignoised with Celiac Disease three weeks ago, I havn't seen my Doc since he just called me on the phone & told me & said to go on a Gluten Free Diet, the Hospital send me a list of food I can eat also a two page list on ingredients to look for some of them I can't even pronounce!! :huh:

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francelajoie Explorer
francelajoie
Posted

Don't panic. Take your time and learn about what you can and cannot eat. After a while, it becomes second nature. This site is the best thing that ever happened to me. I learned alot from people who know alot!!

Take time and read some topics that worry you. Don't be scared to ask questions. You usually get a reply in no more than an hour.

CMCM Rising Star
CMCM
Posted
I was dignoised with Celiac Disease three weeks ago, I havn't seen my Doc since he just called me on the phone & told me & said to go on a Gluten Free Diet, the Hospital send me a list of food I can eat also a two page list on ingredients to look for some of them I can't even pronounce!! :huh:

Your doctor obviously knows next to nothing, and I'm a huge believer in self knowledge....so my suggestion is for you to take control of all this by thoroughly educating yourself.....very easy to do because there are some GREAT books out there, and this forum is also a HUGE resource. I've put together a list of 5 books which I myself just read over the last month and which vastly increased my overall understanding of what I'm up against. Knowledge is power.....when you first get the diagnosis you feel helpless and powerless, and knowledge and understanding immediately gives you back some power. You won't have to depend on a clueless doctor to direct you, and after all, how can he? He doesn't know anything! I imagine your doctor already gave you all he is going to give you....that pathetic little two-page list. Shame on him.

In any case, I'm going to paste in the 5 books I recommend you buy and read right away. All of them together won't cost much....I think the first 4 of them are $9.72 each, and the newest one is $14.92 on Amazon. I've provided all the links, and you can go to each one and read all the reviews. I found every single one of them worth reading because while the theme is the same, their approach is different and they all provide different information. All very easy, non-technical reading, too. These books will tell you 1000% more than your doctor did! And you'll know more than he does when you're done reading!

By the way, these are just the books I have read and can recommend. Other people may recommend additional ones that I haven't discovered yet!

_______

CELIAC/GLUTEN RECOMMENDED READING LIST

Recommended reading on Celiac Disease w/links on Amazon. You can go to each book listing and read the book review as well as reader reviews to get an idea about them. I read all of these front to back and found them all very useful in different ways. I think “Dangerous Grains” was probably the most eye-opening. I can recommend them ALL because they all contribute to your overall knowledge and understanding of celiac disease. If you got all of these, you would spend slightly less than $55 including shipping (free over $25). The best $$$ you could spend!

1. Dangerous Grains by James Braly and James Hoggan $9.72

Open Original Shared Link

_____________

2. Going Against the Grain: How Reducing and Avoiding Grains Can Revitalize

Your Health, by Melissa Diane Smith $9.72

Open Original Shared Link

_____________

3. Wheat Free, Worry Free—The Art of Happy, Healthy Gluten Free Living

by Dana Korn $9.72

Open Original Shared Link

___________________

4. A Personal Touch On.....Celiac Disease (The #1 Diagnosed Intestinal Disorder)

] by Peter R. Berlin & Jerry Stone $9.72

Open Original Shared Link

______________

5. Celiac Disease: A Hidden Epidemic by Peter H.R. Green (just published) $14.92

Open Original Shared Link

To make finding most of these easier, just go to amazon and in the search box put the words "Dangerous Grains", and a page will come up with most of them on it. I think you have to search for the new one (Green’s book) separately if you don’t want to paste in the direct link. Also "Personal Touch" doesn't show up easily either.

GO READ!!! :):):)

jerseyangel Proficient
jerseyangel
Posted

Hi--you've come to the right place! Most of us can relate to the doctor telling us 'you have Celiac Disease--go on the gluten-free diet' and not much else. A good place to start is to look over a safe and forbidden food list--there is one right on this site. Just go to the Site Index on the left of your screen and scroll down to that list. There is a lot of other good info. to be found there, too. Beyond that, you need to make sure that your personal care products and medicines are gluten-free. Go through the kitchen and replace any scratched teflon pans, toaster, wooden utensils and cutting boards and collander. Put your gluten-free foods on their own shelves, and always watch out for crumbs! If you are female, you need to check on your makeup--especially lip products. A big source of cross contamination is eating out. That is best kept to a minimum at the beginning while you are healing. Feel free to ask anything--there are a lot of very knowledgeable people here who have been through this themselves. Now, take a deep breath--it really is not so bad :)

koch Newbie
koch
Posted
  • Author
Your doctor obviously knows next to nothing, and I'm a huge believer in self knowledge....so my suggestion is for you to take control of all this by thoroughly educating yourself.....very easy to do because there are some GREAT books out there, and this forum is also a HUGE resource. I've put together a list of 5 books which I myself just read over the last month and which vastly increased my overall understanding of what I'm up against. Knowledge is power.....when you first get the diagnosis you feel helpless and powerless, and knowledge and understanding immediately gives you back some power. You won't have to depend on a clueless doctor to direct you, and after all, how can he? He doesn't know anything! I imagine your doctor already gave you all he is going to give you....that pathetic little two-page list. Shame on him.

In any case, I'm going to paste in the 5 books I recommend you buy and read right away. All of them together won't cost much....I think the first 4 of them are $9.72 each, and the newest one is $14.92 on Amazon. I've provided all the links, and you can go to each one and read all the reviews. I found every single one of them worth reading because while the theme is the same, their approach is different and they all provide different information. All very easy, non-technical reading, too. These books will tell you 1000% more than your doctor did! And you'll know more than he does when you're done reading!

By the way, these are just the books I have read and can recommend. Other people may recommend additional ones that I haven't discovered yet!

_______

CELIAC/GLUTEN RECOMMENDED READING LIST

Recommended reading on Celiac Disease w/links on Amazon. You can go to each book listing and read the book review as well as reader reviews to get an idea about them. I read all of these front to back and found them all very useful in different ways. I think “Dangerous Grains” was probably the most eye-opening. I can recommend them ALL because they all contribute to your overall knowledge and understanding of celiac disease. If you got all of these, you would spend slightly less than $55 including shipping (free over $25). The best $$$ you could spend!

1. Dangerous Grains by James Braly and James Hoggan $9.72

Open Original Shared Link

_____________

2. Going Against the Grain: How Reducing and Avoiding Grains Can Revitalize

Your Health, by Melissa Diane Smith $9.72

Open Original Shared Link

_____________

3. Wheat Free, Worry Free—The Art of Happy, Healthy Gluten Free Living

by Dana Korn $9.72

Open Original Shared Link

___________________

4. A Personal Touch On.....Celiac Disease (The #1 Diagnosed Intestinal Disorder)

] by Peter R. Berlin & Jerry Stone $9.72

Open Original Shared Link

______________

5. Celiac Disease: A Hidden Epidemic by Peter H.R. Green (just published) $14.92

Open Original Shared Link

To make finding most of these easier, just go to amazon and in the search box put the words "Dangerous Grains", and a page will come up with most of them on it. I think you have to search for the new one (Green’s book) separately if you don’t want to paste in the direct link. Also "Personal Touch" doesn't show up easily either.

GO READ!!! :):):)

tarnalberry Community Regular
tarnalberry
Posted

Welcome. I'm glad you found the board.

It will take a little while to adjust to the gluten-free diet, figuring out what you can have, and what you wan't to have. In the mean time, I encourage you to stick to whole, naturally gluten-free items, like fresh fruits and vegetables, rice, beans, plain meats, eggs, nuts, and dairy. Read the information you have, read the information on this forum, read whatever you can. And then read every label for anything you might ever eat!

And come back and ask lots of questions! :-)

nessa Newbie
nessa
Posted

:( aww man that sucks! it'll be okay though. Basically it's easier if you just think more along the lines of what you can't eat than what you can. Don't eat anything with wheat or barley or rhy in it, there's some others, like I think sorghum is out, but who eats that anyway? If it's too confusing grab some rice crisps (check the ingredients to screen for wheat first) caramels my favorite; some tostitos lime corn chips, and lots and lots of popcorn. Anything familiar that'll take the edge off the hunger, cuz you're gonna be exposed to a LOT of really weird tasting food once you start trying to find bread and stuff. That requires going to the whole foods store or looking online. Just time in gluten free in google and a bunch of stuff comes up. You'll get the hang of it. It's just aggrevating to not be able to eat your favorite foods anymore. But hang in there and get creative it'll be okay.

I was dignoised with Celiac Disease three weeks ago, I havn't seen my Doc since he just called me on the phone & told me & said to go on a Gluten Free Diet, the Hospital send me a list of food I can eat also a two page list on ingredients to look for some of them I can't even pronounce!! :huh:
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jerseyangel Proficient
jerseyangel
Posted

Nessa--Welcome! Actually sorghum is fine for those on a gluten-free diet. Enjoy Life Foods uses it in some of their cookies and things, and it is a good alternative flour for those who are intolerant to rice. Just wanted you to know so you wouldn't have to "watch out" for that, too. :)

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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