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  • Lupus and Gluten

    I was wondering if anyone has ever tried a gluten-free diet, and if so, if they have had any success with it.

    I thought this was interesting. I found it on the Bastyr Center for Natural Health website:

    "Some people who have been diagnosed with systemic lupus erythematosus (SLE) may really be suffering from an intolerance to the gluten in their diet, reports the Annals of the Rheumatic Diseases (2004;63:15013). In the study, three patients who had been treated for SLE for years no longer experienced symptoms or abnormal laboratory tests and were able to discontinue their SLE medications after removing gluten from their diet.".......

    "Doctors frequently equate gluten intolerance with celiac disease, an intestinal disorder in which ingestion of gluten leads to diarrhea, weight loss, abdominal pain, and other problems. The authors of the new study point out, however, that gluten sensitivity can affect many different parts of the body besides the intestines and that some people who become ill from eating gluten do not have celiac disease. For that reason, testing negative for celiac disease does not necessarily rule out gluten sensitivity. The authors suggest that a blood test for antigliadin antibodies can be used to identify gluten intolerance, regardless of whether or not a person has celiac disease."

    Scooter

  • #2
    Hi Scooter,

    "Some people who have been diagnosed with systemic lupus erythematosus (SLE) may really be suffering from an intolerance to the gluten in their diet, reports the Annals of the Rheumatic Diseases (2004;63:15013). In the study, three patients who had been treated for SLE for years no longer experienced symptoms or abnormal laboratory tests and were able to discontinue their SLE medications after removing gluten from their diet.".
    I think that when you have a diagnosis of Lupus it's a diagnosis of Lupus, there's usually no confusion, it's not diagnosed lightly and a lot of other things are ruled out. It's got very different symptoms from Celiac, although they do share a couple. People with celiac can get a rash but it's very different to the malar rash of lupus and it's called Dermatitis Herpetiformus. They can also have some joint soreness.

    When they talk about labs returning to normal I wonder which labs in particular, there are many abnormal labs associated with SLE.

    Having said that I do find I am a bit sensitive to gluten if I have too much. These days I limit it and have found that it helps my joints a little. Limiting it doesn't seem to help any of my other symptoms.

    I was tested for celiac disease during diagnosis and was negative. But I think even without full blown celiac some of us are still a bit gluten intolerant, just not to the extent someone with the disease is. Of course lupus varies so much in everyone its a very individual disease, so what helps me may not help everyone else.

    It's worth trialling cutting down on gluten to see if it does have any effect on your joint symptoms though.

    love
    Lily

    Comment


    • #3
      Me too!

      Hi Scooter & Lily
      I too think there's a connection with gluten and the intolerance to it with many people.
      I could possibly be one of them.
      It would be great if I could go off all my meds for lupus and just eliminate gluten in my diet. However, I know it's not that simple but I will try to eliminate gluten from my diet while still taking my meds & see if I improve.
      I have often wondered why I feel worse after eating breads etc.with gluten but it's often hard to pin down since I have so many different symtoms from time to time.:sad:
      Thanks so much for your input about gluten.
      I'm still not sure what foods contain gluten so I'll have to do my homework. Seems it's in alot of foods these days!!!
      Thanks again for helping me & so many others! It's appreciated!
      Best Regards
      Okie

      Comment


      • #4
        Hi Okie,

        Yes it is in a lot of foods we eat. Here's a bit of a guide.............there's no way I stick to this religiously :hehe:but as long as I don't go overboard then it does seem to help at least a little.

        http://www.betterhealth.vic.gov.au/b...free_diet?open

        love
        Lily

        Comment


        • #5
          Hello

          There's nothing new in this article and it's certainly possible to be gluten intolerant with intestinal reactions to gluten and also to have the outright autoimmune disease celiac along with lupus. I have read of several cases on the board and it's well documented too although it seems the combination isn't all that common in fact ( a good example of how a board might give a false impression).
          I never heard of anybody stopping meds in order to see if they were gluten intolerant. It would make more sense not to change anything, to keep the best baseline possible since you are the only one in the study , in the same way as it's best not to start two medicines at the same time because you can tell what's causing side effects.
          One study found an association between the presence of anti gliadin antibodies and arthritis in lupus patients but not with other typical lupus symptoms such as skin. The authors of this study recommended screening for anti endomysial antibodies for celiac disease in lupus. ( DuBois p833)
          My daughter has had severe enough gastric troubles to have to go to ER on three occasions. She's been very aware of possible associations of food with gastric upsets of any sort and has had to eliminate foodstuffs she identified from bitter experience and self trialing as provoking these acute attacks. Having cut out those items, she thereafter realised that she certainly is also gluten intolerant, with bloating and general discomfort.

          I am a bit concerned that by cutting out bread she might be lacking some essential nutrients Memo to Self: Need to chase that one up). Small amounts don't seem to bother her.
          Okie, you could ask for the antigliadin antibodies test and in particular the one mentioned above, out of interest. Reduce major gluten containing foodstuffs to see if there's any improvement. Keep a diary.
          If at any point you go for the small intestinal biopsy for celiac you have to not cut back on gluten beforehand, but that's another issue.

          In RA it is definitely agreed that some foodstuffs can trigger flares in some people as enough studies have been done. Some lupus doctors think the same is true for lupus in their experience. So keeping a food/ symptoms diary could be useful in identifying any other possible triggers. Dr Hughes mentioned one patient who felt that cheese triggered increased symptoms so she cut it out for a couple of months, then ate a lot. Sure enough she felt a massive flare.
          Apart from that there's plenty of evidence about fish oils reducing inflammation and the benefits of a junk free, low salt, sugar free, animal fat free diet.

          Just make sure that any dietary changes won't cause deficiencies.

          Good Luck and take care
          Clare

          Comment


          • #6
            thanks so much for the feedback!

            Lily,thank you for the gluten food website. I will certainly check it out.
            I really appreciate it.
            Also,thanks to Clare for her guidance and wisdom again. You're always so helpful and knowledgeable about so many things. I will ask my doctor to do those gluten tests that you mentioned.

            Scooter,Lily,Clare--It's always a perk for me to learn more about lupus and what I can do to aleviate any symptoms. You're such a caring and helpful bunch! I remember when very little was known about the disease and that included doctors.
            I'm sure diet plays a major role sometimes and if eliminating gluten helps me and others, it's worth a try and could be so valuable in our treatment.
            Thanks so much --hope I can be of some help to you sometime!
            Your Pal
            Okie

            Comment


            • #7
              gluten intolerance

              I have dealt with celiac sprue for the last 35 or so years. I have severe abdominal pain any time I eat anything containing gluten or gliadin/contained in oats & barley.

              Where I have encountered problems in meds with lupus is that many medications, often generic, contain modified food starch as a stabilizer. Modified food starch can be either wheat, potato, or corn starch. Where it gets confusing is that it is not always one or the other. We need to track down what it contains. I have had to contact drug manufacturers to find out, and have encountered resistance the majority of the time. On a few calls I have had to threaten them with a law suit if I don't get what I need and they refuse to provide it. Then, they listen. It makes me really angry when I have gone thru the spiel to tell them why I am calling, yet they would rather I get sick vs telling me what the product contains. I found this out the hard way. The pain on a scale of 1-10 was a 12.

              Safe products are rice, potatos, corn. Look at ingredients to see if there are listed contaminants: oats, barley, wheat, modified food starch, hydrolyzed vegetable protein-not always wheat but unless you know it is safe, be careful. Soy sauce: tamari contains no wheat. Other brands do contain part of wheat and if you are really sensitive, you can get sick. There are so many alternative products available now it is not nearly as hard as it used to be.

              Many times autoimmune diseases will have what I call "hangers-on" side issues. Celiac can be one of those. I have no idea which for me came first, but am inclined to say that lupus did. I have known more people with celiac who do not have lupus, than the few that I have known who do have lupus and celiac sprue.

              The one area where celiac can pose problems is that if the person has a lot of scar tissue in the small intestine, it can affect absorption of medications and may need more than usual medication to get it absorbed. I fall into this group, and fortunately my doctors have accepted what is, not trying to battle what isn't. My insurance company does routine reviews due to the amount of medications I must take, and have finally accepted that this is the reality, not anything I would wish for. My advice to people who have this double whammy, is to get all your doctors on the same page and if they have problems, then have them communicate with each other. The fewer hassles the better.
              Good luck,
              Sally

              Comment


              • #8
                Hi Sally,

                Thankfully none of my medications contain gluten, lots of them contain maize though. It's terrible that you have to fight to know what ingredients are in your medications! Here in Australia there is a product information sheet with each med (even generics), if it isn't in the box the pharmacist will print out a copy for you. I don't know if it's the law here but there is no trouble as far as being informed what is in them. I guess they leave themselves wide open to prosecution if they don't freely divulge the ingredients so it makes sense.

                love
                Lily

                Comment


                • #9
                  I did follow a gluten free diet for a number of years, in my case it made no difference at all to Lupus.
                  x Lola

                  Comment


                  • #10
                    I don't find it makes any difference to me, other than due to the scarring in my small intestine, I usually require a larger dose of medications. Where there is scar tissue, the cilia used to absorb things in the small intestine is no longer there. When the ulceration heals, the cilia are killed off. Thus, the more scar tissue, the more the inability to absorb anything. So, to get the needed amount of a medication, what is passed thru the gut needs to be higher to just get a therapeutic level absorbed. As long as I stick with my diet restrictions, I am fine. I am lucky to have doctors who are understanding and do battle with my insurance when they question the meds I take.

                    The one thing I am appreciative of now, is that there are so many more wheat free foods available now than were out back at the beginning of my journey with celiac sprue. Fortunately I love asian food and am able to eat most of it. I am blessed to come from a family of great cooks and they are able to adapt to what my limits are. I never have felt left out by any of my immediate or extended family. I know many people who have not been so fortunate. As I keep a wheat free house, my cats and dogs are not any wiser for living according to my limits. They don't know any different and their foods and treats meet my limits.

                    Sally

                    Comment


                    • #11
                      Hey Okie!

                      Try this site: http://www.glutenfreedietfoods.com

                      Comment


                      • #12
                        I've been GF for quite a while. I was just diagnosed with lupus this last week. While the gluten was causing a lot of gi problems, I am having some now with this flare. Since I am struggling so hard right now, I would have to say that gluten didn't affect the lupus. I just am not giving myself even more problems by eating it.

                        Comment


                        • #13
                          Michelle - I would say that a healthy diet is a wise choice for everyone, Lupus or not and knowing how your body reacts and working with it is good. The best advice is to make sure that whatever changes you make are with your consultant's knowledge and with their guidance.

                          As this is a very old thread, I'm going to close it now but thank you for your comments.
                          Best wishes,

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