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chrissy

Mad At The Producers

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Hi there. I'm just wondering? I've been under the impression for years that if Celiac is suspected, especially in children, that if you remove the gluten from their diets, they'll likely turn up negative results when they're finally tested?

I'm curious about who told you that your son needs to be free of gluten until he can be correctly tested.

Just wondering,

Catherine

I wasnt mad at it until recently. I have been buying my sons baby food.. usually Gerber brand (I know I should make my own, but the conveinence wins most days) and most of it is gluten free, except for the obvious, chicken noodle etc. I got rid of all the gluten filled baby food in the house, he is to be gluten free until he can be tested correctly, maybe forever. I went shopping the other day to buy his food, a million jars it seems like and I bought one Turkey Rice by Gerber. I heated it last nite for him and then glanced at the label! I must not have read it in the store like I always do... there was wheat in it! grrrrr... was I mad!

just venting a bit.. thanks!

Tinkerbell

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So can you imagine then, for those of us with celiac and

food allergies!? Usually the alternative product to gluten

is something I'm allergic to. So I prepare my own foods

alot! Don't mention eating out...

But then there are moments of annoyance: I had to ask again (they forgot)

if the store that I shop at, to please order the one of only three salad

dressings I found that I can have. I try to buy in bulk but eventually

it does run out.

Reality really sets in when

one of the online food suppliers I use has "sold out" on one

of my major protein products for weeks at a time.

I can't get mad at the food industry for using gluten, etc. but

I do get totally frustrated when I can't purchase the food I

can acutally eat!

.....Let's not mention cost either B)


alicia

been gluten-free 4 yrs.

too many food allergies to list!

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Alicia--you are right on! I am also one who can't even eat the substitutes--anything with rice or soy or corn affects me negatively. I don't eat anything I don't make anymore because I'm trying so hard to let myself heal. I don't eat out, either. If it weren't for potatoes, forget it! It must be really hard for those who do not have the symptoms to stay on the diet. I know myself, and if I felt fine, or had even mild symptoms, I would find it much harder to comply. As it is, I feel I'm doing everything right, and still manage to get sick. Oy :angry:


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I get angry because there is no need to put wheat in french fries, hash browns, chocolate or a number of other items. I walk into the store I buy rice noodles and fruit and vegetables and leave. I had better choices of food in Jamaica than I do here...go figure.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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I get very frustrated with the food manufacturers too. I mean, gluten DOES NOT need to be added to almost anything they make. Cereal is one thing, at least it is a grain product, although adding barley to rice seems silly to me. But WHY do they have to add gluten products to things like packaged meats???? Dried fruits????vegetable soup??? Things that aren't even CLOSE to being a grain don't need grains added!

Debbie

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buying in bulk is a problem for me as I have nowhere to put it. I have started stashing stuff in my livingroom and bedroom. My friends come over and joke with us and ask "what's the name of your store?"


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Mama,

There is a nurse practicioner in Vegas that has celiac disease -- she can do some of the simple blood tests.

I can give you her contact info if you want.

Bronco

I would like that a lot. I'm actually looking to get a biopsy done since I haven't had one done since I was a toddler. Wouldn't it be pointless to have a blood test done? Isn't that only used to diagnose the disease - not to check up on it later? I don't even know where to start - so to be able to talk to a medical person would help. I'd appreciate her info from you - whatever the results (need a blood test or biopsy done) might be. Thanks for your help!

Have you lived in Vegas long? Have you been to many doctors here - and found one you liked?!


Diagnosed by biopsy with Celiac at age 1 in 1984.

No other health problems.

Hubby - no health problems.

Mallory (2 year old daughter) - no known health problems at this time.

Hannah (born 04/02/07) - no problems yet!

Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

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We discovered this years ago as well. My daughter is now almost 13 and is JUST beginning to 'bloom' when all of her friends are way ahead of her in development. She doesn't like it, but I know it was the healthiest choice. I developed so early that I absolutely had to wear a bra at age 9, and was the first in my class to start my period. So I do believe that the hormones in regular milk are contributing factors to early development.

I am not sure this is accurate. My mother (not knowing any better) made me have lots of milk, to fatten me up (it achieved the opposite), and I didn't really even start to develop until the age of 18, even though I started my period at 10. My sister was fully developed by the time she was 12, but didn't get her period until 14. Weird.

My youngest daughter has never really had milk or milk products, because I suspected a problem (in the meantime she has tested intolerant to all dairy), and she is the earliest bloomer of the four girls (she grew four inches a year from the age of 2, no growth spurts, just steady growth, and looked like a 15-year-old at the age of 11, she is 14 now and is 5'9").


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I would like that a lot. I'm actually looking to get a biopsy done since I haven't had one done since I was a toddler. Wouldn't it be pointless to have a blood test done? Isn't that only used to diagnose the disease - not to check up on it later?

The blood test can be used to check how well you've been following the diet. If there are detectable antibodies in your blood, it means it's likely there's some damage to your intestines, too. And it definitely tells you that you have had some gluten! (Although if you knowingly cheat, you know that already, lol).

Pauliina

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I'm with all of you very frustrated with the food manufacturers too. I spent the day on the phone to find out tuna packs - veggie broth - is SOY. Soy is counter poductive in my healing process.

Is there a way we can all get together and start a thread with each food manufacturer list their name address and phone numbers? (emails don't work for this) And all of us write to them and CC the letters to the FDA. And perhaps let them know we are mad as hell and we aren't gonna take it anymore!.

There are millions of us with celiac disease and other serious food allergies that a tiny bit of an ingredient (with a hidden name) will make us more then just ill. Remember celiac disease does kill!

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