Lupus Community

I have had several people tell me the same thing even though I tested negative for celiacs disease. I don't know, however, if I have enough discipline to do it. I like bread and cake too much!!!

Lupylisa

I am following the gluten free diet story carefully and am intrigued by it. I think everyone who has a chronic autoimmune disease should explore this diet. However, there is not enough high quality scientific data to back up this recommendation. Having said that, in my practice, I have had some significant successes in patients who have gone off gluten. I have also had some patients not respond to this diet at all. It takes about 4 weeks being off gluten to know if it will work for you. There are numerous sites to get information. Especially, in lupus when dealing with severe fatigue, I think a gluten free diet might be helpful. As more science becomes available, I will comment on this topic more.

I started a gluten-free diet about 10 mos. ago, and what convinced me that it was helping is occasionally I would have some significant pain, and when I stopped to think what could have caused it, I realized that I had a sauce or something else with wheat flour. I also was tested for celiac, and it was negative. I found I have been able to continue my life and love for pasta and other foods, with just a little adjustment. I do have to think ahead, and plan for being out. I notify restaurants in advance of my diet. My grocery store carries a lot of gluten-free specialty foods including pastas, waffles, frozen dinners. I also order foods online from Udi's, Linda's Diet Delites, and Kinnikinnick. Moving to this diet alone doesn't control my symptoms, I'm on methotrexate as well. I would caution anyone trying it, to do it for about a month, but don't cheat, because it is very difficult to tell if it is working unless you eliminate it completely, then add a little back in for a meal and observe the difference over the next 24-48 hours.

Here is a slideshow you may be interested in -

Gluten-Free Diet

Elizabeth

Thanks, the slideshow was very helpful!



Lisa

Thanks for the tips and food sites. I will definitely check them out!



Lisa

Thank you for the input. So many times, with a incurable disease, people - while meaning well - will tell you that all you need to do is " stop this" or "try that" and you would be cured. While I understand this is only to help with symptoms, it is nice to know there is some medical thought behind it.

Thanks!

Lisa

Oh wow soo weird. I just replied to a post about digestive issues. I seen my new DR on Monday, so far I really liked her She was talking about a gluten disease called Celiac. She is testing me to see if I am having any gluten issues. I was looking into Celiac and it is associated to autoimmune diseases and Lupus was on it's list. I thought Id share the site for Celiac. http://www.celiac.org/ . Some of the symptoms were obviuous and related to digestive and abdominal problems but others I found were interesting were joint, bone, fatigue, weakness and lack of energ, tingling or numbness in hands or feet and migraines.

I hope to hear my results soon, I will finally feel at ease if I can figure this oddity out. Although Lupus is an oddity in it self.

Dr. Venuturupalli,

I have a question for you, I have had severe asthma and allergies my whole life. After my son was born (24 years ago) I could not get my asthma under control even with my meds. So my doctor did a food RAST test and I tested highly allergic to dairy, wheat, citris, egg yokes and then mildly allergic to pretty much everything else. For a couple of years I did very well eliminating the worst ones, not so easy back then. Then seven years later I got retested with skin testing. Dairy, wheat and citris still came up high and then other foods gradually down from there. The allergist told me to rotate foods as best I could. Since my asthma was calmer I did that. When I was diagnosed lupus and was so weak and put on prednisone the diet went out the window. Now 14 years later with many other secondary autoimmune issues I struggle with should I just go back on such a strick diet. My doctors think it is too stressful. But I am concerned I am causing some of my illnesses with my diet. The other view is that because my allergies are so bad the tests may not be accurate. My first RAST test at age 15 (many years ago) the pulmunary doctor said these tests just showed I had the potential to be allergic to anything. When I asked my primary care for a current RAST test, he did not want to do it, saying it was too open to interpretation. I have read articles on line where some believe these types of allergies can actually be the cause of lupus. What are your thoughts?

In someone who has a long list of allergies and high antibody loads, the RAST test is generally not very accurate. Having said that, I am a proponent of trying to find out what you are allergic to as there might be some environmental or food allergens that could be triggering an autoimmune response. Unfortunately, that is easier said than done. I would suggest that you consider consultation with a top notch allergist/immunologist who could help you figure out which of the many allergies you have are important. In this context, I am also a proponent of the elimination diet.

I have wondered the same thing, and have been tested to see if I had Celiac disease. My results were negative, but the symptoms seem so alike.
It's not the first time I have heard of a similarity between the two diseases. And am interested in reading others comments, especially from more Loopie people like me.

Thank you! I guess I need to geer up the energy for the elimination diet. I went to my primary care the other day and showed him my fingers are clubbing. I have Raynauds and Gerd along with the Lupus, Fibromyalgia and Sjogrens. I have been having chest pain like a rubber band tightening. My last lung function test showed mild gas transfer issues and some scaring at the base of my left lung. The ENT found obstruction in my throat, my voice box is always trying to close ( I can't remember the medical term for it right now) he said that since I have to stay on prednisone I just have to manage the Gerd as best I can. I am wondering if I have Scleroderma after reading other people's posts. I see my rhuematologist Monday and am going to try to get an appointment with a pulmonary doctor. Normally I am pretty upbeat but lately I am both physically and mentally exhausted. Thanks again for your time.

The slide show says you have to give up pasta. Why doesn't somebody who is actually an expert in celiac disease make this slide show? There are several really superior gluten-free pastas on the market, like Tinkyada and BiAglut.