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I know it's something weird to be happy about, but after a year of chronic and constant pain, I'm just tickled pink that it's been gone for twelve hours! Does anyone have any advice for me? What do I do?!Ashley Lee
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#1
Yellow Rose 
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- Group: Advanced Members
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Posted 29 June 2009 - 11:12 AM
Okay first of all just ignore all the celiac info on my profile. I'm logged onto a family member who also has celiacs' account. I'm fourteen and I have celieac's disease. I've been misdiagnosed for almost a year now, and I thought that the unbearable pain was never gonna go away. But five members of my family also have celiac's and after telling them all my syptoms, they figured out I have it. I only found out about two days ago, no blood test yet. But today my family put me on a wheat free diet. I'm used to all of the pain coming right after I eat but I've been pain free for almost twelve hours!!! I know it's something weird to be happy about, but after a year of chronic and constant pain, I'm just tickled pink that it's been gone for twelve hours! Does anyone have any advice for me? What do I do?!
Ashley Lee
I know it's something weird to be happy about, but after a year of chronic and constant pain, I'm just tickled pink that it's been gone for twelve hours! Does anyone have any advice for me? What do I do?!Ashley Lee
27 years of misdiognoses
seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet
rheumatoid arthritis May 1980
wrist joint replacement Jan 1984
fibromyalgia May 1980
insomnia since the 80's
diarrhea 1995-2000 blamed on arthritis meds
Crohn's 1998 after two operations to fix fissures caused by the diarrhea
Other symptons over the last 27 years that have been treated for symptoms not causes:
depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.
After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.
Suspect all three of my children have it as well but still trying to convince them to go get tested.
In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive
Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.
seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet
rheumatoid arthritis May 1980
wrist joint replacement Jan 1984
fibromyalgia May 1980
insomnia since the 80's
diarrhea 1995-2000 blamed on arthritis meds
Crohn's 1998 after two operations to fix fissures caused by the diarrhea
Other symptons over the last 27 years that have been treated for symptoms not causes:
depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.
After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.
Suspect all three of my children have it as well but still trying to convince them to go get tested.
In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive
Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.
#2
luvthelake21
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Posted 29 June 2009 - 08:23 PM
Hey Ashley, my daughter is thirteen and has had it for 3 years. She is doing great on the diet. She was so tired of the pain she was glad to change her diet. It was kind of hard at first not being able to eat a lot of teenagers munchy foods but since there is so much other food she is cool with it. It is good you came here to ask questions. Ask away somebody probley knows the answers.
#3
mushroom
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- Joined: 03-January 08
Posted 29 June 2009 - 09:38 PM
Yeah, what a joy to be pain-free after eating. Sure keeps the motivation going. 
Good luck!
Good luck!
Neroli
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
------------
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
------------
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
#4
Chef16
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Posted 01 July 2009 - 11:11 AM
I know what you mean! It's so great to be pain-free!
The first thing to do is to not panic! You're probably at a loss of what to eat. Living Without magazine has great recipes, if you cook. You can get a lot on the website too. (www.livingwithout.com)
In the meantime, you can buy packaged food. However, there are rules:
1. Check the ingredients!!! If it contains any gluten ingredients, don't eat it, obviosly
Some gluten-containing ingredients/foods are wheat, barley, oats (not determined), rye, malt, coucous, triticale, semolina, graham, ect.
If you ever want to check an ingredient, you can check here: http://www.csaceliac...uten_grains.php
You also need to be careful of things in open containers and bins where people use scoops that could have been in something with gluten. Pretty much just don't eat anything unless you're sure it's safe.
2. Check the "processed with..." list. If it is processed with wheat/gluten, you can't eat it. This can usually be found under the ingredients list (aka cross-contamination)
To get you started, here are some basic foods that you can find at any grocery store:
Basics like most dairy products and all fresh fruit and vegetables
Fruity Pebbles, Bush's Vegetarian beans, Cocoa Puffs, Rice Chex, all Pamelas Products (www.pamelasproducts.com), all Glutino products (www.glutino.com).
A good meal is Trader Joes corn chips with Safeway Organics salsa and grated jack cheese. They're sort of like fresh nachos that are ready in minutes! You can also just eat heated Bush's Vegetarian beans.
If you have a health food store near you, you could probably find an abundance of gluten-free foods there too. For a HUGE list of gluten-free food and restaurants that you can eat at, buy the triumph dining books at http://www.triumphdining.com/?gclid=CKek2I...CFSMSagodnz10PA. They can be a real life saver!
You can also email me with any questions you have. I'd be happy to help! I'm 13 and I've been gluten-free for over 1 yr.
Here's my email address: Emmaliffick16@comcast.net
(Sorry, you might have to enter my email manually, I couldn't get the link to work.)
The first thing to do is to not panic! You're probably at a loss of what to eat. Living Without magazine has great recipes, if you cook. You can get a lot on the website too. (www.livingwithout.com)
In the meantime, you can buy packaged food. However, there are rules:
1. Check the ingredients!!! If it contains any gluten ingredients, don't eat it, obviosly
Some gluten-containing ingredients/foods are wheat, barley, oats (not determined), rye, malt, coucous, triticale, semolina, graham, ect.
If you ever want to check an ingredient, you can check here: http://www.csaceliac...uten_grains.php
You also need to be careful of things in open containers and bins where people use scoops that could have been in something with gluten. Pretty much just don't eat anything unless you're sure it's safe.
2. Check the "processed with..." list. If it is processed with wheat/gluten, you can't eat it. This can usually be found under the ingredients list (aka cross-contamination)
To get you started, here are some basic foods that you can find at any grocery store:
Basics like most dairy products and all fresh fruit and vegetables
Fruity Pebbles, Bush's Vegetarian beans, Cocoa Puffs, Rice Chex, all Pamelas Products (www.pamelasproducts.com), all Glutino products (www.glutino.com).
A good meal is Trader Joes corn chips with Safeway Organics salsa and grated jack cheese. They're sort of like fresh nachos that are ready in minutes! You can also just eat heated Bush's Vegetarian beans.
If you have a health food store near you, you could probably find an abundance of gluten-free foods there too. For a HUGE list of gluten-free food and restaurants that you can eat at, buy the triumph dining books at http://www.triumphdining.com/?gclid=CKek2I...CFSMSagodnz10PA. They can be a real life saver!
You can also email me with any questions you have. I'd be happy to help! I'm 13 and I've been gluten-free for over 1 yr.
Here's my email address: Emmaliffick16@comcast.net
(Sorry, you might have to enter my email manually, I couldn't get the link to work.)
#5
Esther Sparhawk
- Advanced Community Member
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- Group: Advanced Members
- Posts: 110
- Joined: 01-July 06
Posted 02 July 2009 - 08:54 AM
Ashley,
When my daughter was first diagnosed w/ celiac disease, I bought a book called, "Kids with Celiac Disease" by Danna Korn. It was a life-saver! It helps you plan ahead for any teen events that deal with food: pizza night, birthday parties, church youth group, summer camp, school lunches, etc...
I tried to attach a link to Amazon, where you could buy the book online (with a parent's approval/help), but the link wouldn't work for some reason. Health food stores sometimes carry "Kids with Celiac Disease" as well. It's a must-have.
FYI, I'm not just a parent of a kid with celiac disease, I'm also a public school teacher and author. My web site is found at http://passinglovenotes.wordpress.com/
When my daughter was first diagnosed w/ celiac disease, I bought a book called, "Kids with Celiac Disease" by Danna Korn. It was a life-saver! It helps you plan ahead for any teen events that deal with food: pizza night, birthday parties, church youth group, summer camp, school lunches, etc...
I tried to attach a link to Amazon, where you could buy the book online (with a parent's approval/help), but the link wouldn't work for some reason. Health food stores sometimes carry "Kids with Celiac Disease" as well. It's a must-have.
FYI, I'm not just a parent of a kid with celiac disease, I'm also a public school teacher and author. My web site is found at http://passinglovenotes.wordpress.com/
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