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DOTSLADY's Photo DOTSLADY Posts: 10,019
2/14/08 2:22 P

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That "trial and error" thing is awful! Sorry.

I think you'd have to make the soup from scratch.

You might want to read Gluten-Free Living for Dummies by Danna Korn tinyurl.com/yslexr
, or visit www.glutenreactivity.net just to know what it's all about (if you haven't or don't that is!).

Best to you. Again, I'm glad you've shared your story. emoticon

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,152 Days since:  gluten
 
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EMERLEE85's Photo EMERLEE85 Posts: 6
2/14/08 1:18 P

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That is interesting, maybe i should look into getting checked out again.

Rye products in this country is a no, i find here it is developing slower than the UK.

In the UK i had a rye cracker and one bread mix from a local farmers market. It was good, i found the local farmers markets great for finding recipes and bread mixes for 'wheat free'!!

I am still making mistakes because especially recently i am still getting slightly ill i feel it is a trail and error.

Can't help you with the soup sorry i will for sure look out for some though

 
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DOTSLADY's Photo DOTSLADY Posts: 10,019
2/14/08 1:09 P

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Re: the blood test. There are a couple. One is a tTG, the other is a panel of 5 different tests. My dad had the tTG (it was like pulling teeth to get him tested) -- but if you don't check for IgA deficiency, it's an inaccurate result. It was a waste of time and energy to get this test.

Re: the biopsy. Sometimes people test negative by blood test, but yet still are positive by endoscopy/biopsy (someone new here just had this experience - sorry, can't remember who right now). Most people stop at the negative blood test and don't know to check via biopsy. Edit: also, some people are negative to both tests, yet still respond positively to gf diet. At least you got the test though.

What rye products do you eat? Does it have wheat in it also? I tried a wheat free diet long ago and found it difficult to find wheat-free rye anything! So now I'm wondering if you'd make some barley soup how you'd do :).

Edited by: DOTSLADY at: 2/14/2008 (14:30)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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EMERLEE85's Photo EMERLEE85 Posts: 6
2/14/08 12:18 P

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I got tested through a blood test.

Haven't heard of the second test, what does that involve?

Rye i haven't actually had a problem with.

Thank you for replying

 
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DOTSLADY's Photo DOTSLADY Posts: 10,019
2/14/08 12:11 P

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Hi Emerlee - welcome to our team. That's a very interesting profile pic you have there! lol

Your story is interesting, and I have some thoughts/questions.

-I wonder which celiac test they gave you.
-I wonder if you'd have been tested via sm. intestinal biopsy if you'd have been positive.
-I wonder if you eat rye and barley without those same problems.

I'm glad you shared your story; it wasn't too long at all!

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,152 Days since:  gluten
 
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EMERLEE85's Photo EMERLEE85 Posts: 6
2/13/08 10:48 P

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Hi there!
My name is Emily! I am 22 and suffer mainly from a wheat allergy. However more on a gluten free diet because there are still areas of food we are unsure with that react with me.

I have had this allergy for 3 years now, in 2005 i came to boston to work at a summer camp (i am originally from england). One day when we had time off, we headed to a pizza place and i had one slice. On the way home i started to feel extreme pains in my stomach, feel very tired. Then i went back to my cabin of kids, and i felt so weird. On our way to dinner, one of my girls went Emily are you hiding a sweater under your t-shirt. I looked down and couldn't see my feet. My stomach was huge, like i was about to pop out twins or something!! I made it to the dining hall for dinner and just collapsed. In the hospital they couldn't figure out what was wrong. As an international my insurance was great anyways so i got basic stuff. In the end they did x-rays, ultrasound and saw my intestines so swollen. So assumed i was just bloated and 'blocked up' I just got more sick, every morning without fail i would collapsed in a heap.

When i returned home few months later, still very sick. My doctor suggested not mixing proteins and carbs. On the carb days that is when i was sick.

Before the summer started, my Aunt who is a nurse told me she thought i had a food allergy because for years my skin always reacted to water, showers, rain, pools and the sea my skin would break out in all sorts. So we agreed when i returned from America i would do some tests etc... I was like how can i possibly have a allergy i mean crazy!!

It turned out true, my doctor suggested that i avoided wheat for 6 weeks. After 1 week i lost all the swelling i had for 5 months at that point, i wasn't tired, dizzy or in so much pain. I could see my feet!! It was an amazing feeling, having energy again. I was tested for Celiac, but didn't have it. So it was just wheat! However still having the odd issues so still being very careful.

However it is so hard, now i live in Boston and keeping to this diet is hard!! So any support in this would be great

Sorry that was really long.

 
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