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I Can't Sending Message To Other User.

chojny997

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chojny997 Newbie
chojny997
Posted

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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Jestgar Rising Star
Jestgar
Posted

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?

chojny997 Newbie
chojny997
Posted
  • Author

HI everyone

I have request

please you send message to user " ravenwoodglass "

This is her profile

https://www.celiac.com/gluten-free/index.php?showuser=1481

You write message about essence:

https://www.celiac.com/gluten-free/index.php?showtopic=8961

You write too, that chojny997 wants to know her opinion.

THANKS AWFULLY!

psawyer Proficient
psawyer
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

I have gotten your message and replied to the topic. I will be happy to help in any way that I can.

Krista

chojny997 Newbie
chojny997
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

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chojny997 Newbie
chojny997
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

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