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Celiac.com Celiac Disease & Gluten-Free Diet Forum: I Can't Sending Message To Other User. - Celiac.com Celiac Disease & Gluten-Free Diet Forum
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I Can't Sending Message To Other User.
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Posted 14 May 2009 - 11:29 AM
Hi
I come from Poland
I am 28 and I have celiac and sjogren
i want sending mesage to user " ravenwoodglass " but is problem. Not sending 
"Sorry, an error occurred. If you are unsure on how to use a feature, or don't know why you got this error message, try looking through the help files for more information."
Ravenwoodglass write to other forum about sjogren syndrome and celiac.
I search contact to him.
Please help me contact this user or remove problem sending message.
Please use simple english for ease comunicating.
My english is not gut
THANKS AWFULLY
Paul
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Posted 14 May 2009 - 12:19 PM
Hi Paul,
New members have to have a minimum number of posts before they can use the pm feature. Can you post your question in the forum?
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson
My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant
Leap, and the net will appear.
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Posted 15 May 2009 - 10:14 AM
I have sent a message to ravenwoodglass asking her to read this topic.
If you want a private reply, you should go to your own profile and deselect "Hide my email address from other members." This wording is misleading, since your email is not visible. It allows a user to send a message to your email without knowing your address. If you don't reply, they won't know.
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)
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Posted 15 May 2009 - 10:49 AM
I have gotten your message and replied to the topic. I will be happy to help in any way that I can.
Krista
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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Posted 15 May 2009 - 01:00 PM
Hi ravenwoodglass
I have celiac and sjogren
My english is not good. Please use simple english for easy comunicating.
I want to stop sjogren syndrome.
I read your post:
I did, horribly. The good news is within a month gluten-free this problem went away along with a host of others. I weaned myself off all meds (with doctors knowledge) before going gluten-free. I figured I wouldn't really know if being gluten-free was helping if I continued to take the 5 of so prescriptions I was taking for arthritis, IBD, fibromyalgia, peripherial neuropathy, ataxia and GERD. I reasoned I could always start taking them again. After 2 months with no symptoms, even arthritis was gone, I had a pill party as I said good bye to them on a Sunday afternoon. It felt so good to flush those suckers down the toilet. Anyway, hopefully your Sjogrens and other autoimmune problems will disappear like mine did.
I have hope that you have ration.
I wait on moment, when my antibody ( transglutaminaza, endomysium, gliadyn ) to be zero.
How you think? sjogren to be stoping.
I know ,that you have many disease ( IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis )
You write, that all your problem to lower your body when you go to gluten free diet.
When your disease disappearance?.
When your antibody equal zero
Maybe, you waiting 1 month or 2 month?
I have a little salivation and tears.
I dont to lose salivation and tears.
I take steroid of reumatologist but my osteoporosis to be deterioration.
I want to know your opinion.
You have knowledge because you have celiac disease and secondary disease.
Your diet is gluten free diet and eliminating soy. Only this eliminating?
My reumatoloyst said that my sjogren is secondary sjogren and celiac and sjogren this one disease.
I dont know answer, when my sjogren to be stoping and I to be can no take steroid.
I debate - My sjogren is dependent:
my antibody or my situation in my intestine?
In february I was in hospital on rheumatology
MY antibody :
RF is normal
C3 is normal
C4 is normal
ANA is negative
C anca is normal
p anca is normal
Diagnosis doctor- secondary sjogren
biopsy salivary gland focus score 4
Help me please your opinion.
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Posted 15 May 2009 - 03:12 PM
 chojny997, on May 15 2009, 01:00 PM, said:
Hi ravenwoodglass
I have celiac and sjogren
My english is not good. Please use simple english for easy comunicating.
I want to stop sjogren syndrome.
I read your post:
I did, horribly. The good news is within a month gluten-free this problem went away along with a host of others. I weaned myself off all meds (with doctors knowledge) before going gluten-free. I figured I wouldn't really know if being gluten-free was helping if I continued to take the 5 of so prescriptions I was taking for arthritis, IBD, fibromyalgia, peripherial neuropathy, ataxia and GERD. I reasoned I could always start taking them again. After 2 months with no symptoms, even arthritis was gone, I had a pill party as I said good bye to them on a Sunday afternoon. It felt so good to flush those suckers down the toilet. Anyway, hopefully your Sjogrens and other autoimmune problems will disappear like mine did.
I have hope that you have ration.
I wait on moment, when my antibody ( transglutaminaza, endomysium, gliadyn ) to be zero.
How you think? sjogren to be stoping.
I know ,that you have many disease ( IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis )
You write, that all your problem to lower your body when you go to gluten free diet.
When your disease disappearance?.
When your antibody equal zero
Maybe, you waiting 1 month or 2 month?
I have a little salivation and tears.
I dont to lose salivation and tears.
I take steroid of reumatologist but my osteoporosis to be deterioration.
I want to know your opinion.
You have knowledge because you have celiac disease and secondary disease.
Your diet is gluten free diet and eliminating soy. Only this eliminating?
My reumatoloyst said that my sjogren is secondary sjogren and celiac and sjogren this one disease.
I dont know answer, when my sjogren to be stoping and I to be can no take steroid.
I debate - My sjogren is dependent:
my antibody or my situation in my intestine?
In february I was in hospital on rheumatology
MY antibody :
RF is normal
C3 is normal
C4 is normal
ANA is negative
C anca is normal
p anca is normal
Diagnosis doctor- secondary sjogren
biopsy salivary gland focus score 4
Help me please your opinion.
Hello,
For me to get better I needed to eat only fresh whole food. I ate meat, chicken, fish, eggs, vegatables and fruit that was not processed in any way other than cooking them at home. I do use some frozen foods but only vegatables that have only the vegatable as an ingredient. In the beginning I did not eat any special gluten free foods and I still do not eat foods with any kind of wheat starch even if it has been 'made to be gluten free' or foods that are made in the same place as gluten foods. I needed to not eat or drink any distilled gluten grains, things like vinegar and distilled alcohol. I also made sure that all of my medicine was gluten free by checking with the company that makes it. Some of my problems went away quickly but others like my arthritis and the damage to my nerves took a few months to go away.
For most of us it did take a long time to get sick and it does take time to recover. If your tests for gluten antibodies are not going down you need to also make sure your home is gluten free. Check your toiletries, shampoos, lotions, and if you have pets make sure they do not eat gluten either. Cats and dogs lick themselves and us and they can transfer gluten from their mouths to their fur and to us when we pet them. Do not share things like toasters, boards for cutting foods, things like butter, peanut butter, jelly or anything that others use can make us sick if crumbs get in.
I do hope this is of some help to you. I know it is hard to be so strict and it is hard to wait to be better. If your sjoren is from the celiac it should get better with time. I hope it happens soon. Do be sure to read as much as you can here. Your english is really very good and I hope this was written so that you can easily understand. Please feel free to ask any questions you need to and soon you will have enough time here to be able to private message if you need to.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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Posted 16 May 2009 - 02:47 AM
Could you please tell me if the first symptoms disappeared when the antibodies level has decreased or when you have totally eliminated them from your organism. I'm trying to find out what specific conditions must be fulfiled regarding the antibodies, so I can count on initial stage of getting well.
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Posted 16 May 2009 - 03:22 AM
chojny997, on May 16 2009, 03:47 AM, said: Could you please tell me if the first symptoms disappeared when the antibodies level has decreased or when you have totally eliminated them from your organism. I'm trying to find out what specific conditions must be fulfiled regarding the antibodies, so I can count on initial stage of getting well.
I never showed up on the blood tests so that is a question I really can't answer. It was the reason I was so sick for so long and that it took so long to find that I had celiac. Also different people respond differently to the diet. You should post the question in the Post Diagnosis section and see if others who did show positive on the antibody tests can give you a better answer.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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