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Hi there

I'm just recently diagnosed and saw you guys talking about gluten free.
Is this known to make things easier?

Sorry to hear so many people having such difficult times. I feel relieved that my symptoms are no where as severe as others but pretty freaked at reading how it might turn out!

Was told to move somewhere hot when diagnosed with cold aglutinins but then to stay out of sun when diagnosed with sle!!! Whats that all about???
Julie:)
 

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Hello Julie and :welcome:

I have moved your post as it is a separate question in itself and thought you'd get more answers this way :)

Gluten free diets are only recommended for people who have been found to have gluten intolerance, they're not necessary for most people with lupus.

The question of sun and lupus is very important. Many of us are quite intolerant to extremes of temperature and feel especially bad in the heat. The sun itself however is a different matter. UV rays can provoke inflammation in people with SLE (many people are also photosensitive but not all) and can trigger a flare of the disease. That's why top rheumies recommend using factor 50 or higher when you do have to be out in the sun and covering up. Some very photosensitive people will wear factor 50 all year round indoors and outdoors (UV lighting can also trigger symptoms).

I hope that helps answer your questions a bit, bye for now :)

Katharine
 

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Hi Julie and welcome to the site. As youn can see it is a source of info and support.

Take care

Deb
 

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Hi Julie,
For those of us who are gluten intolerant, living on a gluten free diet is a requirement. Some people who have more of an allergy to grains which contain gluten, primarily wheat, oats, barley, rye, are able to feel better as long as they keep to a diet without those foods in it.

There are others of us, who have the autoimmune complex, celiac disease. This is more complicated than an allergy. Basically, the body is not able to digest the proteins, gluten, in grains, and the lesser known compound, gliadin, than an allergy reaction. Left undiagnosed, celiac disease can cause ulcers in the small intestine which when healed, leave scar tissue which blocks absorption of food and lesser known, medications. The scar tissue does not allow for the standard exchanges in the small intestine. Given enough scar tissue, foods and medications are blocked from being absorbed.

There is a lot more to the gluten free diet than many people understand. It takes vigilence to avoid foods which may not contain gluten directly, but avoiding hidden gluten is a task which requires diligence. It can be very frustrating as the hidden gluten can require detective work and is not easy to catch all the time. To have it slip by, can be dangerous depending on the severity of reaction. The pain caused by the ulceration in the small intestine can be severe. Most pain meds don't bring much relief. Not worth the risk, in my experience.

Caught early, the damage can be minimized. So, with my 35+ years of living on a celiac diet, gluten removal is not as easy as it sounds and should not be undertaken without thorough investigation before hand. The hidden gluten can sabotage the best planned attempt.

If you think you may be gluten intolerant, I strongly suggest you have a thorough investigation by a gastroenterologist with experience in working with gluten intolerant cases. In the US there is a group which has chapters in most of the country. Look up Gluten Intolerance Group, aka GIG. You can get more info from them on symptoms and how to seek out a doctor who is experienced in working with gluten intolerance.

Any more questions, please write back.
Sally
 
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